According to Plan...Well, this Latest Plan Anyways

It's come to my attention that when you keep a blog that's at least in part about you having cancer, people start to worry when it isn't updated for a couple months.

Sorry about that.

Things have been going the way we anticipated when I had my most recent bad scan in October. I did take the two additional Adcetris treatments. Those did take the cancer back down to undetectable amounts. I had a PET scan after the second treatment and it was clean, which again is what we thought would happen. The Adcetris has been amazing at temporarily eliminating the cancer, but it isn't going to keep it away long term.

Since that good scan I've moved forward with two more Adcetris treatments just for good measure (for a total of four since my October scan). I finished my (hopefully) last Adcetris treatment this past Friday. Sadly the Adcetris did make most of my brand-new post-transplant hair fall out. I hadn't had any hair loss with the Adcetris before transplant but I suppose since my body was already in a weakened state after the transplant it didn't take much to send those new hairs packing. Still, no cancer in my body > peach fuzz on my head.

The doctor has taken me off my original immuno-suppressants (tachrolimus and Cellcept) and put me on a different one called sirolimus. We are trying to reduce my dosage of that drug as well, but my GvH refuses to be completely controlled, so we're backing off very slowly. Put more simply, I need to stop taking these pills but when I do my skin gets itchy and scaly and my G.I. tract revolts.

With any luck we'll continue to reduce the immuno-suppressants to the point I can come off them altogether. Then my new, transplanted, German-donated immune system can full on attack any cancer that tries to come back. I won't have another scan until February, so until then cancer worries are on cruise control.

I'm going to take the time to revel in a few holidays...and a couple of birthdays. I'll wrap presents, dance to 80's music, ring in a new year, celebrate a special 30th birthday, and right around the time of my scan I'll turn 32. (I was 27 when I was diagnosed.) Maybe in my spare time I'll grow a little bit of hair.

"Cancer Wars, Episode 4: The Hodgkin's Menace"; or "It's Baaaaack"

Click here for the whole opening crawl: http://www.starwars.com/play/online-activities/crawl-creator/index.jsp?cs=uufqk8fsrv

Sometimes, especially after a trilogy, additional sequels are not welcomed.

That's certainly the case right now for me. After three bouts with cancer, and many more different kinds of treatments, I had hoped to have finished my Hodgkin's lymphoma saga. But no. We're all going to be treated to an unwanted new episode.

Yesterday I received the results from my most recent PET/CT scan. New cancerous lymph nodes are showing up. One area we had hoped was residual or inactive has increased in intensity (which means it's showing more cancerous activity). This is all bad news.

My doctor has a plan though. Up until now I've been taking a significant amount of immuno-suppresant medications to try and keep the graft versus host disease (GvH) under control. Though I'm still struggling with GvH, we're going to reduce the drugs keeping my shiny new immune system at bay and hope that it attacks the cancer at full force. (This also involves hoping that it doesn't attack my skin, mouth, eyes, or gastrointestinal system, but if it does there are alternative ways to treat that GvH.)

I'll also do another two rounds of Adcetris treatment, which will ideally quash what new bits of cancer have appeared. That is the same treatment I did in order to prepare for my most recent stem cell transplant (click here to read more about my first Adcetris treatment). It was insanely expensive, but had almost no side effects and completely eliminated the cancer. I'm hoping for a repeat performance.

So to sum up: dark and cancerous forces are again at work, but this battle is far from over.

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.