Compliance

The hair... I suppose it's growing, but it feels and looks just like it did last week. But I saw a friend last weekend, and my hair is almost as long as his. It's pretty short, but still - having longer hair than someone will be a nice milestone!

This week I've been contemplating compliance as I complete my FOURTH week with JP drains hanging off my sides (1-3 weeks is normal), and as I pray for a friend's lung function tests to have better-than-expected results.

In healthcare, we use “compliance” as an assessment word. As in, is our patient compliant with the plan we’ve worked out to make them the healthiest they can be? 

It’s companion word, “non-compliant” feels judgmental, probably because we use it when we decide the patient is not cooperating with their plan. Of course, there is a spectrum from 100% compliant to 0% compliant, and we all fall on it somewhere.

As a patient, I have a different perspective on compliance. For example, I’m a terrible pill-taker. Tell me to do something every day at the same time, and I can guarantee you it’s not going to happen. I’m getting better. With my post-surgical drains still in place, I have to take stinky antibiotics several times a day (they really do smell awful). What a pain! But they’re very important – the last thing I want after all this is to lose my tissue expanders – or worse, my own “tissue” – to an infection! I also have to take an anti-estrogen (anti-breast cancer) pill every day for the next 5-10 YEARS. Uff da. I’ve set a daily alarm on my phone for that one. I’m not taking it at 1pm exactly, but so far I’ve taken it at some point every afternoon.

If you’re healthy, you don’t get a free pass from the compliance wagon. Think exercise, multi-vitamins, healthy eating… everything to maintain your healthy status as long as possible, and be as strong as possible if you do get a big diagnosis.

I’m striving to be on the upper end of the compliance scale. Honestly, what I have to do is pretty minor. It’s certainly given me new insight into people with chronic conditions; who have exercises and medications and therapies to manage every day for the rest of their lives.

I have a young friend who has cystic fibrosis. CF is kind of a lung disease – really, it affects the whole body, but its worst manifestations are in the lungs. It’s a rare genetic defect. Now, we test for it at birth along with a bunch of other metabolic conditions. Before that, it was often identified when moms told doctors their baby tasted salty. Pretty cool, right?

The babies taste salty because CF is an imbalance in the body’s chloride level (remember, salt is sodium chloride). For some reason, the result is thick, sticky mucus, which commonly builds up in the lungs, which makes breathing difficult, and in the GI tract, where it blocks the path from the pancreas to the intestines, preventing digestive enzymes from reaching the intestines and making digestion difficult.

Patients take digestive enzymes every time they eat to compensate for the deficiency from the pancreas, and they have some form of therapy every day to help clear their lungs. Inhaled medications open the airway and loosen mucus, and then a combination of percussion (hitting the chest to loosen and move mucus) and coughing (to get mucus out of the body). In other words, hacking up luggies several times a day (you know what I mean? Spelling credits go to my husband on that one – girls can’t spell luggies, and MS Word doesn’t like it either). For the percussion part, my friend has a cool vibrating vest that she uses for about two hours every day. But luggies… not fun for a teen girl, so the thick, sticky mucus stays inside, and we pray for her lung function to be preserved any way.

So I think about compliance: how important it is, how hard it is, and how patients have to find a balance. Knowing why the routine is important and what happens if you cheat or ignore it is a big, huge part of compliance. So is determination. Some people are good at the regimen of daily must-dos, whether it’s running at 5am, taking pills on time, or choosing dinner at home over McDonald’s, even though it’s easy, fast, cheap, and predictable. Others of us don’t love routine and sometimes want – or need – to take a break from the “musts” and their reminder that we have tests and treatments on record to prove we’re no longer invincible.

And now… it’s 2:30 so I should probably go and take my daily anti-cancer med and those smelly antibiotics. I think I’ll start using my antibiotics as a reminder to pray that my drains can come out SOON.

But first… I “have” to do a few other things upstairs. Like rescue shoes, hats, and soap from my dog - eek!

Hair!

First, before I talk too much about my hair, I want to thank everyone who prayed for my little friend with ITP. He had another treatment a couple weeks ago, with a little prednisone to help out. One day I saw him curled up on the couch, the next day he was running around the house. What a difference a few steroids make! He’s not out of the woods yet, but there’s a plan and I think everyone is feeling better.

My hair is actually visible now! I feel like I can go out into the big world without anything on my head and maybe not look like a cancer survivor. Maybe, but probably not yet. One of my teens said it feels like a puppy– it’s soft, new baby hair, and it’s OK if you want to touch it.

I’ve un-retired my shampoo and conditioner, and I dug out some gel. But I dropped the gel on the floor and the bottle broke open – oh well. It wasn’t the right product anyway. Then I tried a styling paste and Mike got in on the action. He didn’t think I was using enough, but then I ended up with too much and my hair looked old and spiky and felt like it had a coating of wet glue. For now, I’ve put the styling products away and am sporting the “Frankenstein” look: all combed forward. :)

I’ve been taking pictures weekly but not posting them. I could blame surgery and recovery, but really it’s been a little about laziness and lots about lack of inspiration and taking a break from the computer.

So, catching up…

February 22, 2013

I’m wearing my “blanket sweater” to combat the cold, rainy, windy day here, and you can see my white surgical bra peeking out – sexy, right? I’m a little concerned about the reckless abandon with which I present myself these days, but, hey, it was only a week since surgery, and I braved the world with a flat chest and drains (which make my stomach look oddly bumpy… kinda like I have a hamster in each pocket).

Match 1, 2013

I had a video chat with both of my older nieces (and my siblings) this week. The girls are toddlers, so we sing silly songs, I parade a stuffed animal or two across the screen, and have oft-interrupted grown-up conversations with their parents. But what the girls are most interested in seeing is Rayna. Aka “woof” or “doggie.” So I thought she should participate in my weekly hair photo.

And today: the standard shot and a glimpse of how I normally look at home when I’m not experiencing a “warm flush” (I can’t really call them hot flashes because they’re not that dramatic – nothing a hat removal and a sweatshirt-shedding won’t fix).

Happy weekend to all of you. Enjoy your hair!

$16.99 at Target

Yesterday I did something I haven’t done in, well, maybe ever. And I’m REALLY giddy about it. On my way home from my first reconstruction “fill,” I decided to stop at Target and buy myself a bra: OFF THE RACK and WITHOUT TRYING IT ON. Yippee!!!

Seriously, I really am tickled about this. I try everything on before I buy it because I’m not an easy fit. I’m the girl that goes into the dressing room with 20 things and buys 1 or 2. I  always want to apologize to the poor stock girls who have to put everything back. My bras, in particular, have always had a JOB to do – underwire, full-coverage, padded straps, 4 hooks in back, minimizer… it was hard work, and not very glamorous. And the selection is very limited.

Last week I had my post-op appointments, and my general surgeon (who did my mastectomies) gave me a prescription for 6 bras. WOW! Thanks to the multitudes of women who have had breast cancer before me, I can actually get prescription bras for life. Crazy. The next day I saw my plastic surgeon (who put in my tissue expanders and “fills” them with a little more saline every couple weeks). I asked if she had any insights on bra selection. She looked puzzled and said, “You don’t need a bra any more!” Plus I’ll be changing sizes for the next few months. But a skin-sparing mastectomy takes all the breast tissue and leaves the skin, so my chest looks like a shar pei right now… not exactly the contour I want under a t-shirt! I’m thankful it’s still sweatshirt weather.

So I guess it’s up to me. I’ve needed a bra all my life, and I feel a little funny without one – and this is my first chance in years to have something pretty. And sexy. An accessory! And while I think prescription bras for life is completely unnecessary, I want to cash in on this first prescription. I want to enjoy this superfluous need for a bra.

I’ll go to Nordstrom in a couple weeks with my prescription, but for now, something cheap and fun from Target gives me a happy reprieve from my black and white mastectomy camisoles. If only I could get rid of my drains, but that’s another story.

I confess that I tried several bras on. And several shirts that begged to be considered. But I didn’t try on the "bandinis" I bought because they were in a two-pack, attached to each other AND the hanger. Grr. When I got home, we all tried them on. :) We don’t have kids, so we have to regress like this once in awhile. Which brings me to the pictures for this post:

Mike started it.

I wasn't quite as creative.

Poor Rayna. But isn't she cute?