Med-sanity II

My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

I was supposed to have a procedure done on a skin cancer on my ear today, but that’s not happening. Because….sigh.

A little background. While CF is becoming less of a “childhood” disease and more of an “adult” diseases, adult hospitals have not caught up. I’ve been in several, and what I’ve noticed at 98% of them is that the doctors and staff cannot look at someone “young-ish” and see chronic disease. They think that anyone under 50 must have been perfectly healthy her entire life and thus, can just do whatever they want.

WRONG.

A few examples:

• You can’t do an MRI on me. Magnet in my head.

• You can try to put in a PICC line, but it won’t work. My veins are all scarred over from the years of previous PICC lines.

• You can’t use adult sized needles on me; my veins can’t take them. You need baby sized needles, small child sized needles. I have small child sized veins. And you also have to be good—you can’t just look in the crook of my arm or my hand like you could with a regular adult. I’ve had IVs in my shoulder. I’ve had them in my thumb.

And, what’s pertinent to today’s discussion: I am on many* meds for a variety of conditions. You can’t just prescribe a drug for me without looking at side effects and being aware that they might happen.

This is relevant because, as I wrote in the previous post, when you already have mental health issues, you tend to not like drugs that can make those worse.

So, when I (my mom) called the doctor about the side effects I was having—supreme irritability, mood swings, etc.—the nurse said, well, stop the med and I’ll talk to the doctor.

OK. Done.

We (mom and I) get a call a few hours later when we’re at dinner. The nurse says that 1) the doctor doesn’t think the med is causing the issues, but stop anyway 2) they cancelled my appointment for today and 3) they want me to go to my “PCP” (primary care physician) to have my “mental stability” assessed.

That last point is sort of an insult, frankly.

I’ve been seeing a psychologist since I was 16. I’ve been on a medication for anxiety for that long. My doctors KNOWS this. It’s in my freaking chart, that I take this med. I am not unstable, but yeah, the med you put me on? Made me a littleeeeeee irritable and sort of unhinged. Yeah. But that doesn’t mean I’m going to flip over procedure trays and get into WWE fights in the waiting room. Stop the med and I’ll be fine.

It’s like when I do a steroid bolus. It makes me SUPREMELY cranky and irritable. But I know it’s the meds and the courses are usually short. In this case, the med isn’t even necessary, there are other ways to treat this guy. I’ve had lots and lots and lots of terrible medications in my life that have given awful side effects, but they’re necessary so I suck it up and deal with it. This isn’t necessary.

Second, I don’t have a GP/PCP. I TERRIFY GPs, because I’m complicated. The ones I’ve met are usually afraid to do anything to me because they don’t want to mess things up. So my “GP” is my transplant pulmonology team.

Third, read my freaking chart. Really. It comes back to this all the time with adult hospitals and physicians. “Do you have lung issues?” Seriously, I was asked that question. (Not by this doctor. Another wonderful adventure years ago.)

So a procedure today had to be rescheduled for next month, and I have no idea what we’re doing with the cancerous spot on my arm, except I’m not taking the med anymore to treat it.

Which brings us to the big lesson, here:

I have lived in my body for 36 years. I have a very, very well-tuned—exquisitely well-tuned, I’d say—sense of status within it. I know when “something is not right”, to quote Miss Clavel. And I don’t think I’m exaggerating when I say that that instinct, and my parents’ equally honed instinct, has saved my life on a few ocassions.

Doctors and medical people need to listen to me. I’m not always right. But when I say something is the med, it’s the med. When I say X is happening, and it’s because of Y, it probably is.

It’s basic science. When you do an experiment, and you add a variable, an things go haywire—it’s not because of everything that came before. It’s the variable you just added. That thing has pushed the balance over the edge. Remove that thing—balance restored.

*I am on vastly fewer meds now than before transplant. That being said, I’m still on what the average person would consider “a lot” of meds.

Med-sanity!

Seriously, who would get mad at this guy?

One of the things I hate about mental health issues is that it’s so easy to freak out when you feel yourself starting to slide. It’s so gradual, that it can be just a few little things, and then suddenly you have a day like I had today, where if the World’s Cutest Corgis came into my yard, I would’ve flown into murderous rage.

Seriously.

I was so unhinged all day, and if I had to pinpoint it, it would’ve started on Sunday, when I go so angry at the Steelers that I was yelling and swearing and generally losing it. But today, when I wanted to bite the head off any human being I encountered, including my super sweet and wonderful boss, I started to think, waaaaait a minute…..

I ran through the regular triggers. I’d been sleeping amazingly. So that wasn’t it.

I had a Diet Coke, and some Earl Grey. If it was a caffeine/sugar issue, that would fix it. No go. (I put milk and sugar into my Earl Grey, for the record.)

I had some dark chocolate in the house and had a piece of “emergency chocolate.” Nope.

Wait a minute…..maybe it’s……the skin cancer med.

I looked up the side effects online, and there it was: mood disorders (anxiety, depression, etc.)

BINGO.

Now, just knowing that I’m not going crazy—literally—is very helpful.

But in the all and all, I’d rather have physical side effects, because then you can take something. Nausea? Vomiting? Phenergan! Pain? We got stuff for that! Can’t sleep! Meds!

This, nothing I can do except ride it out until Halloween when the course is finished.

I’m already on anti-anxiety meds (since I was 16), so….can’t do anything about that, and even if I wasn’t, it can take awhile for the meds to build up in the system, so it wouldn’t really help, most likely.

So, while the med is just a cream, apparently it’s tres potent, and after not even a week….oh well.

I can hang in there. It’s just nice to know I wasn’t entirely losing my mind. But I think I might hide in my hobbit hole for a few days so I don’t take the head off anyone who doesn’t use their turn signal. :-p

More skin cancers!

As I’ve written about before, I’m really susceptible to skin cancer. Not just because I’m fair, but because of the meds I’m on. The anti-rejection meds I take make me 10 times more likely than the general population to get skin cancer. So even though I am vigilant about sunscreen, and always have been, now I have to be even more vigilant.

Unfortunately, I can’t stop taking the meds. And I can’t—or won’t—live in a burqa. So, that means that no matter how vigilant I am, I’m going to get more. Most likely. But, upped prevention also works; when I swim, I cover my hair with one of these, and so far, my scalp hasn’t had any issues again. (Make sure you find the one with SPF in the fabric!)

It’s cute, right? Right? :-p

The two I have at the moment are, thankfully, easy to treat. One of them is on my tricep, and it’s superficial, so we’re treating it with a special cream. It’s twice a day, for twenty one days, so it’s not a bad course, especially not compared to the IV courses I’ve done that are that long (or longer). I don’t have an IV in, and I’m free to bathe when I want. :) So this is cake.

The second one is on my right ear, on the top curve. FORTUNATELY this is also pretty superficial, so we’re just going to scrape it and laser it off. This is easy, but it does require a lot of waiting room time, because you have to wait three hours between scrape and laser. So, that means books to read!

But enough about me—let’s talk about you. Please, if you haven’t, go to a dermatologist and get a full body check. If you’re a normal person you probably only need to do this yearly. But please do it. The grandfather of a dear friend has skin cancer and it’s metastasized. Skin cancer kills people.

Wear sunscreen. Cover up. Get your skin checked. For the love of God, do not lay out! It’s terrible for your skin, and your vanity. ;-) You want to look younger longer? Don’t tan.

So, that’s this week’s medical adventure.

Surgery updates!

The reaction of most people when I say "skin cancer" is a lot like this.....

So, I have dates for my procedures/surgeries, etc.! 

This coming Wednesday, I'm going to the hospital to have the pre-admission testing done. I'm guessing this will just be heart stuff and vitals--like an EKG and regular stuff. It could be more than that, but that's not what I'm anticipating. Apparently I will also be talking to a doctor, for some unknown reason. This isn't normally how I do pre-admission testing at the Resort; in fact, sometimes there's no testing at all, just a phone call from a surgical nurse to get a history. So this is all new and so much fun! (sarcasm off.) 

Next Tuesday (the 16th), I have my Mohs surgery to actually remove the cancers from the top of my head. These are both squamous cells, not melanomas--so it's not nearly as serious as it could be. However, these guys are bigger than what I've dealt with thus far, so I imagine it will take more than two rounds of surgery to remove the cancerous cells. (For more on how Mohs surgery works, read what I wrote about it here.) The procedure is at 9:30 and I'm to wash my hair really well before I head to the doctor's office, which makes sense, given that it won't be able to be properly washed for awhile. 

After my dermatologist removes all the cancer cells, I get to go home. The next day (May 17), I will go to the hospital with my dad to have the surgery which will actually close the spots my doctor made the previous day, and he (my doctor) will do all the plastic surgical magic to ensure I have hair and not bald spots. (You can read about that here.) I may or may not stay overnight at the hospital. But I will definitely spend a day or two at my parents' since I won't be able to drive and can't be left alone for various reasons, so...whatever. No biggie. 

I'm not anticipating this to be any sort of big deal. But then again, when you've basically been cut in half, nothing is a big deal anymore. Really. And even in the area of head surgery, this is low-key on the Big Deal Chart. When I had my CI implanted, part of skull was removed. That, to me, is a much bigger deal. :) There's a magnet in my skull, people. Moving some scalp around? Not  a problem. 

As far as blogging: There will be a yarn along this week, and mayyyyybe next Tuesday before I go in for surgery. But after that, there may be blogging hiatus. :) 

Transplant side effects: Skin Cancer

I generally don't worry about statistics. 

Before transplant, I caught bugs that very few people caught. Non-infectious Tb? 4% of the CF population gets that. The bug that almost killed me in college? One other person in the world. Seriously. Not kidding. At least, documented, one other person. 

Post-transplant, my stats are flipped. I'm still in the small percentages, but it's good. I'm one of the 55% of women who made it to five years post-transplant. There isn't even data for 10 year survival rates on the UNOS (United Network for Organ Sharing) website--and I'm looking at hitting 12 years in July. 

So when my transplant coordinator, way back in that first July, talked about skin cancer and sun protection, I just sort of nodded. Our ("our" being transplant recipients here) risk of getting skin cancer is 10x higher than the general population. But, I've always been really good about sun protection. I've burned maybe three times in my life. I keep lots of sunscreen around. I seek shade. I go to the dermatologist every six months to get checked out. I am fair, but I'm also Italian, so that probably helps a little bit--but I am generally quite protective of my skin. I'm very familiar with SPF and its iterations in products. 

But. All that being said--eventually, the statistics might catch up with you. 

And so it was that, when I visited the dermatologist last week for my yearly skin exam (I see her more often than that, but this was the annual full body check), she biopsied three suspicious spots. 

And all three of them came back as types of skin cancer. Squamous Cell Carcinoma, (SCC) to be exact. 

So tomorrow I'm having mohs surgery to have these spots removed. We're not doing all three at one go; we're breaking it up into two sessions, one this week, and one next. Mohs surgery involves the surgeon (which my dermatologist is) taking very very very thin slices of skin, examining them under a microscope, and checking for cancer cells. She removes these layers of skin until the microscope shows no more cancer. And voila! No more cancer! So I don't even want to call it cancer, because seriously, this is like, minor leagues. I go in, I get some skin cut off, and we move on. Easy. 

Now, that being said, SCC can be fatal. 8,000 people die of it in the U.S. every year. And of course now I even have to be more careful about sun protection. All my v-neck t-shirts? Gone. I'm going to be adding to my hat collection. There are going to be multiple SPF products in my purse at all times. 

But I can get this fixed and keep it in check with regular dermatologist appointments, and possibly some immunosuppression tweaking. Because that's the big part of the issue. 

Some of the meds I'm on  make the skin photosensitive--really sensitive to light, and can cause it to burn much faster than a normal person's. Hence, the good sun protection strategies I had in place. 

But the immunosuppression drugs also keep the immune system from functioning properly, as we know. And that includes hampering its ability to kill potential cancer cells. 

I've gotten rid of one med that made my skin photosensitive--good! And now we're trying to see what we can do with the immunosuppression. We might not be able to do much, because there's not a wealth of pharmaceutical products we can choose from, here. But we'll see what can happen. Obviously, we want to keep my lungs in tact! And if push comes to shove, that's what I'm choosing. I can wear more sun screen and have my skin checked more often, but it's really hard to find a new pair of lungs, as we know. 

I'm also using this post to implore you to protect your skin, especially if you're fair like I am. Seriously. I know I'm a a much higher risk for these things than the general population, but skin cancer, in general, is skyrocketing in the U.S. Tans are not cool, people. Don't go to tanning beds. Don't "lay out" for hours to get toasty brown. That's not a good look.

• Wear hats (big sun hats when you're at the beach--baseball caps don't cut it. If you do wear a baseball cap, put sunscreen on your ears!).
• Wear sunscreen all the time. You can get sunburned on a cloudy day. 
• Get sunglasses with UV protection in the lenses.
• If you really need the extra protection, do what I do and get face cream with SPF in it. (This is my favorite. And if you get the big one, it will last you almost a year. Seriously. Mine has. So it works out, budget-wise, because it's cheaper than the drug store bottles of moisturizer that you keep buying. And it's very hard to find SPF 30 in a moisturizer!) And it's worth it to get SPF protection anyway, even if you just want to minimize/delay signs of aging.There's also Clinique City Block.
•  Fresh's Sugar Lip treatments are what I wear during the day now instead of lipstick, because SPF 15! I really don't want to get part of my lip cut off, guys. And neither do you, I bet. Or grab a regular lip balm with SPF in it. Those aren't hard to find. Foundations and BB/CC creams also have SPF in them. (Bobbi Brown, Supergoop, and Smashbox are three brands to check out.) 
• This is a revelation to me--hand cream with SPF 40. Seriously? Awesome. 
• And finally, get clothes--or at the very least, swimwear--with UPF, which is like SPF for clothes. I started wearing one of these last year, and I'm getting another one for our trip to the beach this year. Yes, I can go to the beach, and I'm going to be there with an umbrella, lots of sunscreen, this coverup, and hats! Other companies that have UPF items include Lands End and Duluth Trading Company. It's becoming more and more common, thankfully. 

Anything you do to protect your skin is better than nothing. So even if you're not nearly as high risk as I am, do yourself a favor and learn how to protect your skin--and do it. Be smart.