When She Tries

As we were leaving a cross country race last week Brynn told me that she doesn't care about trying to get medals anymore. This was possibly spurred by not winning any medals yet this season. Of course I told her that I didn't care about what place she finished in or if she won a medal, as long as she tried her very best.

Then she said it. And it knocked me off my feet.

"I don't like running and I'm NOT going to do my best!"

Whoa there little lady. There are a great many things you can say to your mother, but "I will not try" is not one of them. For a moment I just looked at her in shock and disbelief. She had said it aloud, to my face, with no trace of trepidation or remorse.

Needless to say a brief but heated conversation ensued about expectations. She was still not willing to say she'd do her best at her next meet.

The frustrating part is, when Brynn *tries* she can do some really amazing things.

Last night Brynn needed to draw a picture for a fundraiser they're doing at school. (You parents know the one: "Here's a free tiny magnet/sticker of your child's artwork. Please buy $100+ of additional items with your precious offspring's talent plastered on it! Aprons! Coffee mugs! Bongs! If you'll pay money for it, we'll put that picture on ANYTHING!")

Well she devoted almost the whole night to it.

A shining moment when the overachiever genes beat back the slacker genes.

Now if I can just find a way to channel that effort into other activities, I'll be the happiest mom around.

Back to School, Back to Business

Today was Brynn's first day in the sixth grade. Much to her disappointment her new school continues to group 6th grade in with the elementary school, and she had been looking forward to officially being a middle schooler.

I knew she was at least a little nervous this morning because she asked me to walk inside with her. We've reached the stage where 85% of the time I'm an embarrassment, so her willingness to be seen with me was a sign that something wasn't sitting right with her. It could have been the fact that she'd forgotten how to get to her classroom or it could have just been first day jitters, but either way I was happy to escort her inside.

At first she stuck close by me, but then we bumped into the only other sixth grader Brynn knows at her new school (our neighbor). Immediately Brynn shifted her attention to her friend, but subtly looked over her shoulder and indicated she still wanted me to tag along. This lasted until we ended up in the cafeteria and the girls sat down at a table full of potential new friends. When I leaned over to tell Brynn where I'd be picking her up in the afternoon she looked at me like I had 3 heads. Like the lamest 3 headed monster ever. Time to go.

Thank goodness for school dress codes. I won't miss this summer's short-shorts.

This afternoon when I pulled up to the curb to pick Brynn up I was happy to see that she looked cheerful. Of course I asked how her first day was. Without missing a beat she replied, "It was good. There are two cute boys in my class."

Well, I'm glad all the important things fell into place.

A Perfect PET

It's not unusual for me to know the results of my PET/CT scans long before I sit down with my doctor. The scan is performed at the hospital and, once the results are ready, a summary is faxed to my doctor. Because I'm the patient though, I can go directly to the hospital and request a copy of the results. When there are several days between my scan and my doctor appointment, I'm prone to getting the summary early because the curiosity (and worry) are overwhelming.

This round was different though. My scan was on a Friday morning and my doctor appointment was on Monday morning, so there was no time for me to sneakily find out my results on my own. I'd have to wait for the doctor to deliver the news. By the time he came into the room I was ready to burst, certain I was going to simply blurt out "WAS IT OKAY?!?" with a crazed look in my eye. He beat me to the blurting things out though.

Dr: (clearly irritated): You're not getting scans there any more.

Me: (somewhat thrown off): Okay?

Dr: They shouldn't just put anything that's wrong in the report, they should outline everything they see. You're just not going back there for any more scans!

Me: (sort of laughing at his irritation, but now also alarmed that he referred to something "wrong" in the report): Okay?

Dr: (picking up on my alarm): Oh, nothing's wrong, but this report is awful!

Me: (giant sigh of relief) Oh thank goodness!

So that's how I found out that my PET/CT results showed NO CANCER, as an aside to my doctor's annoyance at the quality of the scan report.

Did you hear that folks? One hundred days out from receiving my donor's stem cells, my body is still not re-growing any cancer!

Day 100, or Look Ma, No Tails!

Friday marked the 100th day since I received my donor's stem cells (which is technically considered the day of the transplant). Since then I've lost my hair, had complications from graft vs. host disease (GvH), swollen up from steroids, and been on doctor's restrictions (aka house arrest). But I've also gotten the GvH under control (mostly), slowly reduced my steroid dose, and continued eating, breathing, and spending time with Brynn. It hasn't been the easiest hundred days, but it's been one hundred days I might not have otherwise seen.

To mark the occasion, I had a PET/CT scan, which will show whether the cancer is regrowing or not, AND I had my "line" taken out. I won't know the results of the scan until next week, so we can all wait in (sc)anticipation. Getting the line out was a long awaited moment of relief though. For those of you who aren't familiar, the line I'm referring to was my triple lumen Hickman catheter. It was "installed" in my chest the day I checked into the hospital for the transplant...all the way back in April. Since then I've had what amounts to an open wound just next to my shoulder! It's like a friendly invitation to germs, "Just come right on in, the blood flow is fine." Thanks to a great team of nurses who changed my dressing (which I called my "sticker") and flushed out the line twice a week, I was able to stave off getting an infection. But it meant careful showering, daily attentiveness, not yanking the thing out accidentally (it was over a foot long!), and always having "tails" poking under my shirts.

Having the line installed was a big deal. I was anesthetized, taken back to surgery, and billed out the wazoo. So I was surprised when I overheard a nurse telling another patient not to worry, because even a monkey could take out these lines. I was even more surprised when I was sent, not to surgery, but just to my surgeon's office to have it removed. He snipped a couple of stitches, numbed the area just around the line itself, and slowly pulled it out. That was it. It took me ten times as long to drive home from his office as it did to actually take the line out. Don't worry though, I'm sure I'll still get billed out the wazoo. It was well worth it though. When the surgeon saw me looking at the line laying limply on his instrument tray, he warned me that I couldn't take it with me. I told him I had no such intention and that if I never see another Hickman catheter it'll be too soon.

The future home of yet another visible-when-I-wear-a-strapless-dress scar.

Day 100 also marks the loosening of my restrictions. I still need to avoid crowds and germs, but I can go more places and eat more things. My doctor suggested carry-out instead of dine-in, but either is a big improvement over having to cook every night for months. And of course I'm going to be smart about where I go and what I do. While I very much want to just get back to "normal," I know that taking any ill-advised risks could put me back in the hospital or worse. My immune system is still a puny weakling. That means it's  easier to avoid germy situations and stay healthy than it is to get better. So I'll continue to follow most of my restrictions, but that doesn't mean I won't be hitting the road. After 100 days of house arrest, a road trip might be just what the doctor* ordered.

(*metaphorically only, my actual doctor would have me live in a bubble if at all reasonable)

Obamacare in Action...Already!

Today my insurance sent me...(wait for it)...a CHECK! Technically it's Brynn's insurance, which is a private policy I took out for her through HumanaOne years ago. She's been covered under this policy since 2005, and the premiums have crept up each year, to the point where I now pay $267/month just for Brynn's insurance.

Now I understand how insurance works (trust me on this one, because to be honest I wish I had a lot less experience dealing with insurance). I know that while you're healthy some of your premium goes to cover those who are sick and then if you get sick (like I did) others' premiums go to paying your bills. I also realize that insurance companies have employees and operating costs and yadda yadda yadda.

But in 2011 Humana reported a *profit* of $1,099,400,000. That's just profit. And they were ranked #79 in the list of America's largest corporations (source for profit and rank: CNN Money).

Thanks to the new Affordable Healthcare Act (aka Obamacare), I just got a tiny bit of that back.

Since Brynn is an unusually healthy child, we usually only go to the doctor and dentist for well visits. Of course there's the occasional sneeze, sniffle, or ache, but usually no more than an extra visit or two a year. So the $3,200 I pay annually for her insurance did seem a little steep, but no one wants to see their child un- or under insured.

The health care legislation also thought this was a little pricey for someone who uses their insurance so little. It contains an 80/20 rule, which basically says 80% of the premium I pay to Humana must then be spent on medical care. They can use the other 20% for overhead, but 80% has to actually cover medical care.

So when I opened the letter from Humana today I actually did a little happy dance. Here's the exact wording:

If for some reason you can't read that in the picture it says "Enclosed is your health insurance premium rebate check which is required by the Affordable Care Act -- health care reform -- and the Medical Loss Ratio provision. The purpose of this requirement is to lower the cost of health care coverage."

This is the first face of Obamacare I've experienced in person, and so far I like it just as much as I thought I would.

Inflatable Me

"Claire. It's a family name."
"It's a fat girl's name"
"I'm not fat."
"Well not at present, but I can see you really pushing maximum density. See I'm not sure if you know this, but there are two kinds of fat people: there's fat people that were born to be fat, and there's fat people that were once thin but they became fat, so when you look at 'em you can sorta see that thin person inside."


Don't get me wrong. I'm not invoking The Breakfast Club trying to imply that I've ever been thin. I haven't. Two very loving grandparents and Little Debbie collaborated to be sure I was always kind of a plump kid. (Mmmm...oatmeal creme pies).

This quote has seemed so relevant to me over the past few weeks because what I didn't realize is that steroids are apparently what can push a person just past maximum density and make them explode. Seemingly overnight I went from looking like me, to looking like movie me in a fat suit! My face did anyway, and I guess that's more make-up than a fat suit, but you get the idea. Do you remember when Inspector Gadget would shout "Go, go gadget coat!" and (eventually) his little trench coat would *POOF* out into a balloon? That's what happened...to my neck and cheeks.

I'd been forewarned. Dr. Essell told me I might see "some" swelling in my face. Of course at that point the GvH was so bad he could have told me that the steroids were going to cause my hair to grow back plaid and I'd have totally taken them anyway. "Some" doesn't really cover it though. I started describing it to people as my face turning into a pumpkin shape. A quick internet search revealed that this condition is informally called "moon face" and rightfully so, my features now float in a tiny space of my inflated face just like the man in the moon.

It's odd because the rest of my body hasn't really changed, or if it has I'm actually a little slimmer (this assessment based on how often I'm required to wear a belt with pants). You'd think, or I did, that if steroids made you "bulk up" it would be all over, not in one small region. I should be careful what I say though...I hear there's also a phenomenon called "apple belly" and I have no desire to find out what that's about. Having a 400lb head on a 165lb body will have to be my style for now.

I've been really self-conscious about the whole thing too. I try to warn people before they see me in person and I've refrained from taking many pictures (more or less posting them on facebook!) But I've decided since this is part of the process of getting better, I'd share it. Plus I realized I can't avoid the whole world until I deflate. Eventually my face will return to normal, but my steroid dose is at 25mg, we're only going down by 5mg each week, my GvH already seems to be flaring up, and facial shrinking apparently doesn't even *begin* until I'm under 10mg...and it's a long process. So maybe by Christmas I'll not look like a bald, clean shaven Santa?

In the meantime, "Go, go double chin!"

13 Hours of Sleep

There's really nothing exciting about yesterday...except that I slept for 13 hours of it. Technically, those beautiful hours stretched into this morning, but who cares about details when you've just woken up.

One of the (many,many) side effects of the steroid I'm taking is that it inhibits sleeping. On a good night I sleep 5-6 hours, on a bad one, 2 hours. Then I simply lay there, knowing I need more rest, unable to fall back asleep. Very, very frustrated. As a result I refuse to take naps, because who knows, I might not fall asleep that night at all.

In a funny twist though, the trick to me capturing such a long nights sleep (even if it was off and on) is that I have a bit of an infection. I've started on meds for it, but those will take a few days to kick in. To top it off I had a splitting headache since Thursday that taking even a tramadol (pain pill) didn't phase. By the time I threw up I decided that was it. This called for a nap. And the nap turned into the most prized hours of sleep I've gotten since my transplant. Phew. My body needed that.

Aside from this little infection, things have been going really well. The GvH isn't bothering my eyes or mouth and my skin has cleared up from all the blotchiness. Something (even the doc isn't entirely sure) is causing me to have neuropathy (tingling in my fingertips) but that doesn't bother me much, just feels unusual.The steroids make my hands shake (to quote my most tactful friend "You look like you have Parkinson's!). They've also caused "some" facial swelling, which the doctor had warned me about. "Some" turns out to be a condition unofficially called moon face, and it's making my head look like a giant pumpkin. Even my cheeks are taut from the swelling.

We are decreasing the steroid dose, but slowly so the GvH doesn't flare. This week I'm down to 30mg a day (which is a huge drop from the 160 I started at) and we'll go down to 20mg next Friday. After that we'll reduce by 5mg each week. The goal is to get me off them completely, but if the GvH acts up then we'll have to keep them on the roster for awhile.

I'll continue to be on tight restrictions until at least the end of July, possibly longer. In the meantime I've been doing a lot of organizing. The kind that you tell yourself, "one day, when I have some time, I'm going to..." File cabinets beware, I have a paper shredder and I'm not afraid to use it! I've also had a few visitors come by, which has been wonderful. And Brynn and I even threw a "Very Merry Un-Birthday" party for her one day (I'll blog about that soon). So while medical house arrest isn't the most fun I've ever had, I'm making the best of it and feeling productive.