Friday, August 30, 2013

Recovery Update & Xander News

It is so good to be home! I have been progressing very well. My main job has been to keep track of which medications to take when. I made a little spreadsheet to keep myself on track (and to avoid overdosing!) I will tell you this, I am NOT waiting 4-6 weeks to go back to work. 3 will be just fine, and will make my life considerably less difficult than if I had to scrunch the semester into a shorter time period.

We came home from the hospital a week ago on Friday evening, and my Mom stayed with us through Sunday afternoon. I was able to get up and go to church on Sunday morning with no problem. I have taken naps when I need them, and generally kind of putter around and do low-impact stuff around the house.

Monday, the kids went to school and Matt went to work. I was left home alone and tried to do some baking, but reaching into my baking cupboard was a stretch beyond what was comfortable for me. I did get a pan of banana bars made, but was VERY grateful when someone showed up at the door with dinner because I was wiped out!

Tuesday and Wednesday, I ended up going with Matt to work at the church just to keep myself out of trouble. He gave me a little project to work on which mostly consisted of writing and cutting. I felt much better those two days.

I'm pretty tired of not driving. I dislike having to be chauffeured around like Miss Daisy. Also, I am a horrible backseat driver. Mom says maybe Matt should teach Xander to drive, not me. She's probably right.

Speaking of Xander (our 13 year-old son), Thursday we took him to the doctor. He has developed a pectus in his chest during his adolescent growth spurt, that looks something like this:

Xander is clearly more intelligent than this boy. 
You can just tell by the vacant look in his eyes.

His lower ribs really flare forward more than this drawing, making the depression appear deeper than it is. We have been concerned that it was impairing his heart/lung function when he was exercising, as he gets winded really easily and it scares him a bit. Obviously, it is not life-threatening, but we finally got insurance that would cover the doctor's visit, so we took him in.

The pediatric cardiologist that he saw didn't seem too concerned about the pectus itself- he says it has to be really deep to move the heart like in the drawing above, but he saw several things that point to the possibility of Marfan Syndrome, specifically his tall, lanky stature, the stretch marks on his back (stretch marks?! I thought those red lines were just scratches!), the fact that he wears glasses and some of his joins hyper-extend. Marfan Syndrome is a connective tissue disorder than can effect several different parts of the body, specifically the heart, blood vessels, joints, bones and eyes.

If he has this, it is very mild.  It is a genetic disorder, and no one on either side of our family has it. Most of the characteristics above can also be applied to me: tall(ish), lanky, with bad eyes and joints that hyper-extend. They did an Echocardiogram, which showed that his heart is functioning perfectly, but he has a slightly enlarged aorta. At this point, it is just something to keep an eye on. They will measure it again in a year and see if it grows proportionally with the rest of his body, or gets out of control.

They also set up a CT scan and a visit with a surgeon for a couple of weeks from now. The cardiologist that we talked to said that if Xander is really self-conscious about the dip in his sternum- and it is very noticeable, it looks like he took a cannonball to the chest, that psychological reasons are enough to have the area repaired surgically and still be eligible to be covered by insurance. He is at a good age to have the surgery, as his cartilage is still very flexible.

I didn't really get a chance to talk to Xander about this last night because of his activities, so this morning, I asked how he was feeling about it all. He said it was good to know that his heart is just fine, and he's safe to do most physical activities- but has an excuse not to do any serious weight-lifting sports like wrestling, football or hockey. I told him that surgery is an option, and it's kind of up to him. I don't want him to be so self-conscious about it his whole life, and to say, "I could've had surgery when I was a kid, but my parents wouldn't pay for it,"* when he's an adult.  We're going to let him think about it for a while. There's no rush. We'll let you know what happens with that as things progress.

*(you have to use a sullen teenager voice in your head when you read that part)

Anyway, back to me.  :)  Here's me today:
the ruffles on this shirt hide a multitude of weird problems
(AKA, non-existent breasts and the drains around my tummy)

Today (Friday) is Matt's birthday (yay!), and I had two doctor's appointments scheduled (boo!). At 9 am, I went in to the plastic surgeon's clinic and had my last 2 drains removed. I was worried that it was going to really hurt, as I've heard some horror stories, but it was fine (whew!). My whole chest area is permanently numb now, so that gives me an advantage in any further treatments I will have. Which will hopefully just be the expansions from here on out. (Well, and the final implant surgery, and then possibly tattoos. We'll talk about that later.)

I say "hopefully" because when I went to the breast surgeon this afternoon, he said that there was about a 1 cm visible tumor that he removed with the breast tissue. I asked how this could be, since the MRI showed that it was only 3 mm. He said the MRI only picks up the solid core of cancer cells, but the visible tumor was significantly larger than that (I might not have the details quite right here). He is concerned that the margins that he removed around the tumor cells might not be enough and I might have to do radiation.

I just want to be done with this! Also, radiation messes with the reconstruction process. And radiation causes cancer. "You have cancer? Here's a treatment, but the side effect is more cancer!"* I don't like it. They're really going to have to do some convincing to get me on board with this.

* (you have to read this part in a game show announcer voice)

They are going to present me at Breast Conference next Wednesday, Sept. 4, and as a team decide whether the ongoing Herceptin treatments will be enough or whether they will have to go the more aggressive radiation route.

And you thought you were done praying for me!

So here are the two specific requests that I have:

1.) For Xander's health and the possibility of surgery as described above.
2.) That I will not need radiation. (Please, oh please, oh please, oh please!) You can target prayers for the doctors making the decisions on Wednesday, Sept. 4 (I don't know what time of day, probably early).

Thanks once again to those who have sent money and gift cards. You have eased our financial fears through this stressful summer. We are so very grateful!

I am heading back to work on Sept. 9, and am excited to be getting back to "normal." I got a preview of my USF student load today, and I already have 15-17 students, plus three that have to finish incompletes (AKA senior recitals) from last semester. And there will probably be more once the semester starts next week.

I have enjoyed the unstructured pace of my summer, but it's time to go back to being a productive member of society again.


  1. your back<3 and Xander's

  2. When I first saw the photo of the black top, I thought you were wearing your high school prom dress....which I think you still could wear...

    I don't understand why Dosch couldn't see the tumor margins and remove enough tissue during your surgery. I agree that you might want a second opinion... Having your case presented at the conference on Wednesday is a step in the right direction. That said, you should discuss it with Dr. Krie. She is a pretty credible source of opinion....