Little "Miss" Compromise

A lot has happened since I last updated this blog, so please bear with me if this post seems a bit all over the map. It's a common problem in my world, though I can honestly say that I wouldn't have it any other way.

The most exciting news is that a dear friend from my hospital's transplant program (and a fellow CFer) got his brand new lungs just about 48 hours after I wrote the last post about our little "CF/transplant group." For all the dry runs and the drama and the frustration of my time on the list, I truly can't imagine what this guy went through in waiting for over 2 years for lungs, all while attempting to keep up with the first one and then two handsome sons he shares with his gorgeous and incredibly loving wife. They are truly inspiring people and wonderful parents, and I am so excited for them to move forward together as a perfect, happy, and HEALTHY family. To the donor and the family who made this all possible, wherever you are today, thank you from the bottom of our hearts from all of us who know and adore these special people!

As for me, I get to take care of several routine and not-so-routine health matters before the month is out, including transplant clinic, some less-than-awesome digestive "fun", the endocrinologist to follow up on my pathetic Vit. D levels, a bravo test for my reflux, and the dermatologist. For sanity's sake, we'll keep the discussion of most of those to a minimum and just focus on the circus du jour, otherwise known as a complete dermatology check up.

For those of you who have never had the pleasure of this experience, you're missing out. The process basically involves stripping down and getting a complete body once over by someone trained to know the difference between a freckle and a serious problem. In my case, since I'm covered in freckles pretty much from head to toe, this typically feels like a some sort of military hazing activity. Luckily the visit today was less painful (literally) thanks to the presence of hand held mirrors. Points to the doc for thinking up that one.

What was fun, though, was the final "consultation" part of the program, during which I was informed by the staff that people on immunosuppressive drugs are 65 to 250% more likely to develop skin cancer than your average John or Jane Doe. Where exactly I fall within that large range was never actually explained, but since I have pretty fair Irish skin I'm guessing it's in the upper numbers. Skin cancer, I was told, is dangerous and possibly deadly. The take home message was definitely that the sun is a monster of which I should be afraid, be very, very afraid.

Now, I am cautious about the sun by pretty much any standard. I've known about the increased skin cancer rates since before I had my transplant, and I've also known that certain of my other drugs (like antibiotics, for example), make me more sensitive than most people to the sun and more susceptible to sunburn. Also, as someone suffering from chronic and incurable whiteness, I learned at a very young age that I go straight from pale to burned. There is no tan in my world, there is just increased freckling that sometimes blends together in some form of brownness -- and that only seconds before I turn roughly the shade of a lobster in a boiling pot. I was about 5 years old when I discovered SPF 45, and I can honestly say that I've never looked back.

But that, according to the helpful folks at the dermatology department, isn't quite good enough. In fact, their list of suggested precautions went something like this:

-NEVER EVER EVER leave the house (regardless of weather) without wearing SPF 30 or higher on all exposed skin patches. EVER.
-In fact, since sun and UV rays can come through windows, always wear sunscreen indoors as well.
-Not that it matters anyway, though, because no part of your skin should ever be exposed to the sun. Wear hats with sun protection and SPF clothing at all times.
-SPF 15 is useless. We laugh in the face of SPF 15. It is basically grease. It probably attracts the sun. The makers of SPF 15 are probably paid by the cancer lobby.
-The safest place to live is in a dark hole underground. Second place goes to houses and apartments with no windows, provided you never leave. Anything less than that and you're screwed.

Basically the advice could be summed up as: go outside as little as possible and when you do wear long sleeves with sun protection built in and SPF 30-45 on any exposed parts. And stay away from windows."

Here's the thing though: I'm not afraid. I know the sun can hurt me and I know I'm not invincible (nothing like CF and a lung transplant to teach you that lesson!) and I know I need to be careful. I know all that. But I also know that a lifetime of defying expectations and refusing to listen to life expectancies or warnings not to ride my horse or play too hard or travel too much or whatever have NEVER ONCE persuaded me that the right way to live is to value caution over life. Not then, not now, and hopefully not ever.

So here's my compromise:
-I do wear sunscreen, and I do wear SPF 30 or higher.
-I do NOT wear clothes with SPF, not because I'm stupid, but because fashion is actually important to me. My sister designs gorgeous clothes and I want to wear them.
-I do NOT always cover up every part of me. I do, however, take basic precautions like wearing sun hats.
-I do try to avoid being outside in the sun for extended periods of time, if I can do so without missing out on an activity that is important to me.
-I do not currently wear sunscreen in the winter, but I will going forward. That seems reasonable. Also, I will remember to wear it even if I'm not planning on being outside, particularly in summer.

Okay, so it's not perfect, but I think it strikes a nice balance between being careful and allowing me to be myself, which includes the part of me who grew up in the mountains and loves the outdoors. And who knows? It might even help a little with my low vitamin D levels, which are of course related to sun intake.

The reason I chose to write about this though is not to get approval of my personal compromise plan. In fact, quite the opposite -- I'm quite positive that by posting this I'm leaving myself vulnerable to actual criticism from some of my doctors and the medical staff at my hospital, at least a few of whom know about this blog and occasionally read it. Trust me when I say I'm not expecting any kudos here, nor do I expect everyone will agree with me. Instead, I chose to write this because I think it's important that we, as patients, know and understand our own power to take well-meaning medical advice, think about it logically, and make our own decisions about how to integrate it (or not) into our own lives. I would actually go so far as to say that I think this is the number one job we have as patients: not to follow instructions blindly, but to have an active sense of our own health needs and emotional priorities and to spend at least some time deciding for ourselves how best to balance the two. Anything less is, to borrow from earlier in this post, missing out.

Look, I know my lungs are a gift, and the last thing I want to do is jeopardize that gift by being stupid in the sun. I have friends who didn't make it to transplant, and others who died after their bodies rejected their lungs. To do anything less than the best I could by this new set is in some ways a slap in the face to all those who die each year without the chance at new life, or to my donor who gave me my life back. I know this, and believe me: it is not a responsibility that I take lightly.

At the same time, though, I know my lungs are my chance to live my life in ways I haven't been able to for a long time. For me this means outdoor activities. It means not allowing my health to dictate everything from my clothing choices to the amount of time I spend at the window. It means never taking a single breath for granted and knowing that sometimes I will have to suck it up and do things I don't want to do for the sake of my body, but not that I need to stop living. To put it another way, wearing SPF clothing might not seem like much of a compromise to make. Nor, for that matter, is giving up eating raw food or alcohol or going outside without a mask or riding the subway or swimming in indoor pools or taking all the drugs or not allowing my dog to sleep with me or not taking Communion at church or not shaking hands or avoiding crowds or taking the blood thinner shots that give me nasty bruises or never touching a public computer or not eating from a communal chip bowl at parties or never sharing food or...well, you get the idea. Every single one of these things, taken individually, is actually a reasonable suggestion. Put them all together, though, and it's easy to see how these rules can start to take over your life. And since a lot of them CAN'T be compromised AT ALL (taking all the drugs, for example) then it stands to reason that where one might negotiate leeway is in some of the others (I shake hands with strangers all the time, and then I use hand sanitizer). I personally don't think this is a stupid risk on my part, but I guess that's open to interpretation.

So now I want to hear from a couple of you, if possible. Email me or comment below or whatever, but share a little about how you deal with the "life"/health dichotomy. When, if ever, do you make compromises? Why or why not? And, hugely, what do you do to ensure that you don't "miss out" on any of the things that are important priorities for YOU?

Love, light, and best wishes for a happy and healthy 2012, beautiful people.

Say When

One of the things that I, and most people with chronic illness, struggle with is the question of "when to say when?" Oh, wait, scratch that. I guess I should have said that one of the problems that pretty much every.single.person. in the world struggles with is "when to say when?" Seriously, let's just call a spade a spade and admit that this one's a universal brain teaser: all of us wonder how much is too much, and when enough is enough. And if we're really lucky, a few of us might actually come up with the "right" answer (or, you know, right for us, anyway) every so often. It's a little process that my friend Charlie and I like to call "whenning!"

Sorry.

Lately I've felt all sorts of pressure in this area, not gonna lie. It's something I've learned to live with, of course, but that doesn't necessarily make me an expert. When I was a child, for example, I was told not to horseback ride (I ended up competing internationally in showjumping), I was told to slow down and take college in several years (did it in 4 with multiple majors), and I was told there were a lot of really good places for me to live -- just so long as it wasn't a stuffy apartment in a gigantic city. Awesome.

I don't say any of the above to brag, by the way. If anything, looking at that list (and noting the countless examples I could have used as well), I'm a little embarrassed by my own stubbornness. And yes, before anyone keels over from the sheer obviousness of that statement, let me be the first to admit that I, Piper, am sometimes just a tiny bit on the stubborn side. Only rarely though, because the rest of the time I'm just flat out super stubborn. Let's just say it's part of my charm.

The thing is, I've recently had the privilege of talking with a lot of CFers and CF parents through this blog and other mediums, and the most common questions I get (besides the "what would you do differently if you could do it all again?" zinger, which is a whole 'nother blog to say the least) all have to do with the "when/when" question.

If my CF child seems a little lethargic but not overtly sick, when do I push him to get up and be active and when is it okay for him to stay home from school and rest a little longer?

If my kid needs to gain weight, when do I push him to eat and when is it okay for him to just tell me he's full and leave the table?

If I have some sort of really important or exciting event coming up, but I know it might run me down and make me more likely to get sick, when is it okay to choose "life" over CF for a day or two and when is that just asking for trouble? And how do I do that maybe just a little bit without being totally reckless about it?

If my heart is truly telling me to do something that I know my doctors won't approve of, but which for one reason or another means the world to me, when do I stand up and assert myself as a person, and when do I need to just bow my head and listen as a patient?

When do I know it's time to bite the bullet and go see that transplant team my CF doctor's been blabbering on about at clinic, and when is it okay (even beneficial) to believe that my lungs are magical and this scarring is totally gonna clear up tomorrow if I just push a little harder?

And, of course, my personal favorite,

If I really truly super duper honestly and cross my heart adore my job and can't imagine doing anything except what I'm doing and worked really really really hard to get here but know that it's really taking a toll on my lungs and body, when do I know the time has come to choose my physical health over my mental health? And once I DO make that extremely tough decision, when do I know if it might be safe to start crawling my way back or trying out something new, even if I just got put BACK on IVs for the 8 billionth time in the last 3 years and am now facing 2 weeks of polymyxin with a side order of sinus surgery?!?!

You know, not that I have a personal connection to any of these questions or anything. I just really enjoy detailed hypotheticals, is all.

Unfortunately, most of the time I don't have any answers, which just leaves me standing before an expectant parent (or staring blankly at a wordless reply email) and wondering whether I could casually pull the fire alarm as a way to change the subject -- though something tells me that wouldn't work too well in an electronic communication. Because, the thing is, I don't actually know what your (or your child's) limits are. I don't. I have no idea whether you're making the "right" decision by keeping him home from his best friend's birthday because that kid down the street has the sniffles, or if adding that biology course is a "good idea" or just an unnecessary risk for an English major. I can't tell you whether to get a dog because some people are allergic and some dogs bite, or whether to live in a big city because some places in the city are decidedly dirty but on the other hand you'll probably have access to great health care. What I can do, though, is be open about MY experiences, and admit that I've done both those things, risky or not, and I'm still breathing.

Since the transplant, my personal questions have changed a little bit, but they're still very much a part of my life. As an immunocompromised person, I risk infection every time I step out the door, but for the most part I still keep stepping. On the other hand, I now find myself "saying when" sometimes when before, with my CF lungs, I probably wouldn't have batted an eyelash (yes, NYC subway system, I'm looking at you on this one). Also -- and I'll admit that this one's a kicker for me -- I don't understand nearly as much about life with CF after transplantation as I did about life with CF before transplantation. I don't know when I can insist that the random pseudo they found in my bronch probably isn't a big deal and anyway I've got big plans for the night, doc, and when I should just suck it up, smile as graciously as possible, and check myself into that darn hospital I love so much. I don't yet know how big the risks are and (far more importantly), I don't yet really know my "new" body and how it will react to all this stuff I put it through. And, yes, for those of you keeping track, that's multiple times in the very same post that I have admitted that I just don't know. I'll just hang out here while you all go alert the media.

I guess the point I'm trying to make is that I'm not sure there is a "right" answer in some of the more complicated "when/when" situations. Sometimes there's a right choice in the moment (the choice, for example, to grab life by the horns and go for it) that might not in fact be the right choice in the long run. Or there's a choice that might be right for your health, but not so much right for your sense of yourself as a person, and your personal life goals. And sometimes the "wrong" choice (to put yourself through rigorous schooling for a stressful job) turns out to be right when you end up with killer insurance and awesome sick leave or disability policies.

Most of the time with these types of decisions you're not going to please everyone involved, but you are going to have to live (and hopefully make your peace with) the results. Which is why when people ask me that other question -- the "what would you do differently?" monster -- my usual answer is that I would probably do it all a lot differently, if I knew then what I know now.

And then I just thank God that I didn't.