As most of you have now heard about, endlessly, when I was diagnosed with cancer I immediately developed the experience into a fun, if not lucrative, comedy routine and book. And why not? I mean, cancer is an obvious choice for humor especially since it was breast cancer and I could say boobs over and over again. Har har.
But then about a year ago I was once again diagnosed with a life-altering disease and while I was certainly jovial about it (as anyone of course would be), I haven’t really harvested much comedy material from it. In an ironic turn of events, after surviving cancer, stylishly, I might add, I now have something called pulmonary arterial hypertension (PAH). It’s a treatable but incurable kind of a deal, so unlike cancer I will never really get rid of it. And, uh, it’s supposed to be progressive which I guess means I am in for even more good times in the future.
Say what you will about the state of health care in this country, but I feel extremely fortunate to have health insurance that covers the $10K/month in medications that I need to be on forever. And I guess it’s time for me to start leveraging this whole health situation for everyone’s amusement as well, so here goes a rather long post about my health journey over the last 11 months.
Where to begin? Well, let’s start with the symptoms. At first I just couldn’t breathe, and then I kind of couldn’t walk more than 10 steps without resting and panting. Hmm, I thought, what’s up with this? I mean as we recently discussed, I am hardly a specimen of physical fitness, but I should be able to walk across a hotel lobby without resting. Twice.
Eventually it occurred to me that it might be wise to go to the doctor. I mean on the off chance that not being able to breathe or walk was a health concern. Of course, because this is such a rare disease, and screening for it involves an invasive procedure, it is the very last, and I mean very last, thing to be considered as a possible diagnosis. So I went through about two months of bizarre scans and tests and a whole new cadre of doctors until every other possible cause was eliminated. Perhaps it’s immodest of me to say that I have singlehandedly driven up the cost of health care in America; I don’t like to brag.
At any rate, last May they finally decided to do this right heart catheter thing to check out the whole PAH situation. Oh the rollicking good times! First of all, they do it in the OR but you are wide awake. Bright lights, freezing cold, and a cast of thousands. And if you think a hospital gown is not a good look for me, well, let’s just say that completely removing it is none too attractive either. And because I’m such a lucky girl, I had a team of very nice looking male nurses that day. Talk about a rough day at the office…for everyone!
So now I’m naked in an OR with a doctor I have never met before, who I have been told is the best of the best at this whole affair. His bedside manner unfortunately left much to be desired. For example, on three separate occasions he offered me valium, and each of the three times I enthusiastically accepted the offer, but then he muttered something about me being fine without it and withdrew his offer all together. OK, fine, I can roll with it.
But now we’re in the thick of it (no pain, I couldn’t feel a thing except embarrassed about my lack of cover) and the doctor gets really excited and starts telling everyone about my wedge number. I don’t know what a wedge number is, but apparently mine was extraordinarily high, or maybe extraordinarily low; it was the opposite end of wherever it is supposed to be. I know I’m prone to whining, but when I’m lounging around in an OR, with a catheter in my heart, what I specifically don’t want to hear is “Wow! I’ve never seen anything this bad!”
I kind of raised my hand and reminded the doctor that I was awake, and sans the valium he had originally promised me. I told him that while I was delighted to be of such academic interest to him, I thought it might be nice if he would pipe the frack down. Then I realized that being a smart ass with the man who has a wire connected to my heart might not be the best idea, so I smiled and laughed it off.
So that’s how we found out what was wrong with me, but no one knows why. When doctors don’t know the root cause of something they call it idiopathic, or as I like to say, Idiot-Pathic. As to the meds, while I am fortunate that they are covered by insurance, they come from a central pharmacy which means I basically have to call and beg for them every month. They call it speaking with a PAH specialist; I call it groveling. But eventually they check off all the little boxes on their sheet and cough up the pills.
The bottom line is that I still have my mojo, and ain’t nobody taking that away from me! But, I have to do things a little differently these days. So for example I still go out to hear music once a month or so with my friends, but dancing is off limits (some observers of my “dancing” might actually be relieved to hear that). I can get through an airport or train station, as I did recently with trips to Chicago and NYC, but it takes me longer, with stops to rest.
Why am I sharing my whole sob story now? Because some of my friends know, and some don’t, and sometimes I have to explain why I’m doing or not doing certain things and I want to be clear that it’s not because I’ve lost my joie de vivre! Au contraire! It’s just the new, slightly different me (who apparently thinks she can speak French). And sometimes there’s stuff I want to blog about, but it in some way involves my breathing situation, and no one would know what the hell I’m talking about. But most importantly, it’s because it’s my blog and I can whine if I want to! So there.
I know you’re all wondering what you can do to help. I’ve said it before and I’ll say it again: a sparkly, expensive gift certainly makes a girl feel better at a time like this. So yeah. Do that.