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. 

Nothing Says Success like Being Reminded You Could be Dead

Today was an unqualified success. Yesterday I went in for a PET/CT (which shows if there's any cancer growth). I'm already over 30 days out from receiving my donor cells, so it was time to run a check and see how things were going. Results were already back today, and clean as a whistle. No cancer on the scan.

Plus my graft vs. host (GvH) is starting to clear up even more. My hands chest and head are starting to look normal again and I'm able to do things like open bottles (which was much too painful just a week ago). My mouth is still quite raw inside, but it gets a wee bit better every day. I still have eye irritation, but I think that will abate once my steroids are reduced.

Which is why I was thrilled when the doctor told me that we're reducing my dose of steroids again. I'm on a metric ton of them, so it's a slow and trying process to come off of them. But starting out at 80mgs of steroids twice a day means I have a long way to go. Now I'm down to 2 doses of 60mgs a day. The lessened dose will make my muscles (and apparently ankles) weak, but I'm anxious to be on the lower doses. Steroids have some nasty side effects and I'd like to avoid as many of them as possible.

This is *most* of tomorrow's pills. An additional 7 and that's it.

 So everything at today's visit was looking up. The doctor even gave me a few days off from seeing him in the office (back on Friday afternoon). Last week I was there Mon - Sat...every single early morning. So this little vacation is quite the reprieve. Of course, if anything flares back up, it's back to daily morning visits for me. For today though, I'm happily on the upswing.

And to put things even further into perspective, my doctor offhandedly mentioned that if we hadn't treated the GvH, I'd be dead. Right now. No question. The steroids and the immuno-suppressants that I whine about taking are the only reason I get to curl up on my couch with my baby girl tonight and leisurely watch a movie. That beats the hell out of dead.

Coming Full Circle

So my graft vs. host seems to want to hang around. Everytime it starts to ease up in one place, it crops up somewhere new and seemingly worse (like all over the inside of my mouth and throat). We're not just going to roll over and let it do its worst though. Today the doctor added another immuno-suppresant called Cellcept to my drug list. Along with another immuno-suppressant (Prograf), these two meds should help beat the graft back down into submission...or at least hopefully get it to quit attacking my skin, mouth, stomach, etc.

There's an ironic twist to this new drug though. All medicines that I'm aware of are required to list the side effects of the drug. Things like nausea, blurry vision, constipation/diarrhea, etc. are all just par for the course. Today's new med has an extra special warning though...

"WARNING: Mycophenolate [Cellcept] decreases the body's ability to protect against illness and infection, and may also increase your risk of developing lymph node tumors (lymphoma) and other types of tumors. ...Notify your doctor immediately if you develop signs of infection or other symptoms such as weight loss, night sweats, enlarged lymph nodes, or skin growths."

Did you catch that? My new med CAN CAUSE LYMPHOMA.

And that, folks, is coming full circle.

Give me 5 on my GvH covered hand for irony in the highest degree.

My Own Worst Enemy: Graft vs. Host Edition

Do you ever have days where you feel like your body just won't cooperate with you? Maybe when you're especially tired or feeling sick? Well my body is hosting a full-on attack on...well...my body.

I've developed graft vs host (GvH), which happens when the donor's immune system (now my new immune system, aka the graft) doesn't recognize my body (the host) and attacks it. Ideally I would develop *just* enough GvH so that the new immune system will recognize any new cancer as foreign and attack it, but not so much as to cause all these other cruddy symptoms. GvH can cause everything from dry itchy eyes, to dry mouth, to skin rashes, to gastrointestinal problems, to organ malfunction, even to death.

So naturally the doctors are taking my outbreak very seriously. They started me on 80mg of steroids a day (a lot) and when that didn't immediately work they DOUBLED the dose to 160mg a day! The first night I wasn't sure I was going to be able to sleep a wink, the steroids had me buzzing around getting all sorts of things accomplished. I'm getting the hang of it now (sleeping that is) but the steroids still haven't made much of a dent in my skin rash. Today I was told that unless my skin shows marked improvement by Monday, they might have to check me back in the hospital to get super, epic IV steroids three times a day. I'd rather not, so I'm cheering for a quick weekend recovery. Plus, it would be great if every bit of my skin above my knees would quit itching.

You can see a bit of rash on my face & neck here. I could show you the worse parts, but I'd have to flash you.

Other than the GvH and its associated symptoms, I've been doing great. My blood counts continue to look good; I've not needed a blood or platelet transfusion since I was discharged from the hospital. I'll be on "house arrest" at least until the 100th day post transplant (sometime in August). That means no retail therapy, no baseball games, no roller coaster, and no restaurants. If you ask me, I think a lunch from Penn Station and a DQ pecan cluster blizzard would do a body good, but I'll follow my doctor's orders until I'm cleared in the fall. Then I'll eat ALL the food.

On the Rise

After what feels like quite a bit of waiting, my white blood count is finally on the rise. A normal WBC is between 4.6 and 10.2. Mine went as low as .2. Then, ever so slowly, it began to creep up a few days ago. First to .4, then to .6, then to .9, and finally today to 1.5. It isn't rapid progress but it's a move in the right direction. Basically this means that the stem cells from the transplant have nuzzled down into my marrow and they're starting to produce new blood cells for me. My new immune system is in its infancy, but it's working and growing. In order to go home I need my ANC (a subset of the WBC) to be at .5 for 3 days. Today's ANC was only .1, but again that's an improvement over the previous day's count of 0.0. I'll take every step forward I can get!

The doctors and nurses love this particular room decoration.

 I'm feeling much better than I was during my first week and a half in here. My nausea has mostly subsided and, while I still don't feel like I *want* to eat anything, at least my stomach rumbles and lets me know I am, in fact, hungry. I haven't had any infections (knock on wood) with the exception of a possible small infection around my "line" that cleared up with antibiotics. The hospital is terribly boring, but I've gotten SO many cards and gifts to help keep me entertained. Thanks to everyone who has been thinking about (and worrying about) me. With any luck I'll be home by the weekend!

***Update (5/2): The doctor has decided that since I've been doing so well and since my counts are way up today (WBC 2.7, ANC .8) I should get to go home tomorrow!