I Lied To You. Kind of.

We all hate hearing that, don't we? Especially if it comes from our spouse or significant other or anyone we trust for that matter. And the "kind of" part - what the hell is that about?!?!?

I'm here to come clean. I did lie - one of those "lies of omission." Or, in this case, more of a half-truth. And we all know that a half-truth means a half-lie, right?

Just so you know, this entry isn't about the AIDS/LifeCycle event or why I chose to ride next year. If you're reading for that, there's probably no need to read further. This entry's  just about me. Because the past six weeks have been pretty... well, pretty hellish. It's been a roller coaster of health scares, lab tests, and emotions you wouldn't believe.

This is a microscopic image of MRSA.
A pic of a MRSA abscess is just too...
well, you understand... it's gross.

First, there was a minor thing that could've been a major thing. Only a few close friends and people at work knew about it. During the first week of October, I was exposed to MRSA... antibiotic resistant staph. I quarantined myself for ten days then had cultures done and everything came back negative. Whew! Deep sigh of relief everyone... deep sigh!

Then near the end of October I was feeling pressure in my chest. This one was much more public and quite a bit scarier. You see, many people with long-term HIV infection have a weakened heart muscle. No one's really certain as to why. Viral infections definitely affect all tissues, including muscle. And we've only really known about, and been studying, HIV for thirty years. Take into account the fact that I've had the virus for nearly 22 of those 30 years... in some ways I'm a lab rat. Those of us who've made it this long are the first group of people to show what long-term infection and use of antivirals can do to the body. The studies vary, but the numbers come in somewhere between 15-30 percent of long-term survivors have early onset heart disease. You can read a little more about that here in the New York Times.

The eternal optimist.

Knowing that, I don't take pressure in my chest lightly.

No pun intended.

Obviously, the hospital doesn't either. My risk factors, coupled with a "suspect" EKG (also something common with long-term HIV infection), prompted them to admit me and run a bunch of tests. X-rays, blood draws, ultrasounds, stress tests. And they discharged me with a diagnosis of cardiomyopathy and an ejection fraction of 25. Oh yeah - and prescriptions for three heart medications.

They pretty much told me I was a heart attack waiting to happen.

I didn't fill the prescriptions (to this day, I don't jump on the "take a pill" bandwagon - probably saved my life in some ways) but I did call my primary care physician and cardiologist immediately. My PCP couldn't see me for nearly three weeks but my cardiologist had an opening the next day. I am blessed in more ways than you'll ever know. And I have to thank Eric for reminding me to call the cardiologist even if my PCP couldn't see me.

I must admit, by this point I
was tired of all the needles.

Dr. Khan is probably the best educated cardiologist in Las Vegas when it comes to HIV-related heart disease (see, told you I was blessed). He understands things like those suspect EKG readings and he knows what to look for and which tests to run. And tests he ran. All of them. Poking, prodding, videos, x-rays, some radioactive material shot into my arm, sitting still for 30 minutes to scan my heart, blood tests, viral cultures. But the one thing he did give me was a little hope - he said there was no way in hell I completed a 21 mile bike ride just five days prior to getting an LVEF reading of 25. A ride in which I didn't even break a sweat. He thought they made a mistake.

Thankfully, they did. When all the results from all the tests came back, my heart and lung functions were totally normal and everything else came back negative. There's still not a clear answer as to why I felt pressure in my chest but he listed off a number of possibilities - none of which are any worse for your health than an ordinary paper cut.




So, now comes the lie. Kind of.

Just days after I got the all-clear from my cardiologist (five days to be exact), I went in for a routine cleaning at the dentist. What's the worst that could happen there? A cavity? Receding gums? An abscessed tooth? Need for a root canal?

Disclaimer: This is not my mouth - I mean, I hope
my teeth are in a little better shape than that.

Try cancer. Yeah. The hygienist saw some areas in my soft tissues and palate that she didn't remember seeing before - and she sees me 3-4 times a year. Seriously, Carolyn and I know each other well... we talk about vacations and family and relationships. Ok, she talks, I mumble. You know the old story about chit-chat in the hair salon? Well, that's the type of relationship I have with Carolyn. And she saw something that looked similar to the picture on the right. The doctor took a look with a velscope, confirmed there was reason for concern, took some photos & video, then wrote up a referral for an oral surgeon.

Post-surgery on Thursday. My poor friend Lisa
actually saw me like this. And, yes, there was
too much gauze to contain it in my mouth.

I called as soon as I got home. They had an opening the next day. Again, how blessed can I be? 

A couple of visits, a few cuts & quite a few stitches later, the tissue samples were sent to the pathologist. And the waiting began.

Did I mention how blessed I sometimes feel? Oh yeah, I did.

Dr. Frank understood my concern. Well, he understood because I voiced it. If he sent samples to the lab on Thursday and it takes a week to get the results back, then that would fall on Thanksgiving. No way I wanted to wait four days longer for results unless I absolutely had to. I mean, I was freaked out. And worn out. After the previous two issues, I just didn't have much energy left to keep on keeping on in that optimistic way I strive so hard to maintain. I very calmly explained my anxiety to him and he agreed to do what he could to ensure I received the results before the holiday.

You know what he did - he called the lab every day. He made sure they received the samples. Asked them to review them as soon as they could. And guess what... they did. They received the final samples on Monday. I had results this morning. A squeaky wheel doesn't have to be too squeaky. Sometimes, all we have to do is ask nicely. After more than two decades of managing my healthcare, one thing I've learned is to be open & honest with my healthcare provider and participate every step of the way.


The results came back negative. Hallelujah! No signs of any cancerous cells. I just have something called melanotic macules throughout much of the soft tissue in my mouth... well, everywhere except my tongue. My gums, my cheeks, my palate are all affected. Kind of like moles on your skin. Just dark spots you'll probably never see, no matter how intimate we may get. Most likely a genetic thing - from some darker skinned ancestor. You know, like the spots some dogs have on their tongue or gums. Yep. If you've called me a dog before (and a few of you have) you may have been correct in some ways. Feel free to call me "Spot" from now on.

I kept this information from most of you. The guys at work knew about it. Again, very blessed because I have those guys on my team. They picked up the slack, took on some added stress, and were supportive through each of these ordeals. Even dealt with me on the phone after the pain-pills kicked in... and trust me, I was loopy! A couple friends knew about it. Actually, only one friend knew the whole truth. And my brother knew too. He caught me on the phone right after I was leaving the surgeon on my birthday and it just came out. But I swore him to secrecy. Didn't want my sister or my mom to worry until I knew what exactly was going on. Just as I didn't want any of you to worry - and I know you would have if I'd told you the truth. So instead I told you a half-truth. I told you I had gum surgery. Which I did. I just didn't tell you why. No need for you to go through any unnecessary stress when we all have enough of it in our lives.

See, I told ya that wasn't my mouth in the
photo above... my smile's not half-bad ;)

I'm sure many of you are thinking, "He didn't have to go through this alone. I would have been there to support him." I know you would have. But, I've also seen how these types of things stress the people closest to us. Knowing you would be there if the results had come back differently is what got me through this. You see, you were there to support me. I didn't go through this alone. Sure, you might not have known - but I knew. I knew that if the news wasn't good, I could call up any one of you and you'd be there in whatever way I needed most.

You've each proven to me again and again... and again... the power & strength in community, family, and love. Having that as a foundation allowed me to manage one week  on my own while I waited for the results. My trust in you - your participation in my life - that's all I needed until I got the news. And the news was good. So thank you for being there for me... even if you didn't know you were.

There are no lies in this entry. Only truths. The two most important are 1) after a bazillion tests, I'm healthy and 2) I couldn't have made it through all this without the support of my family & friends. Oh, and can I add a third? I really hope to never go through six weeks like this again, hah!

I'll do my best not to tell half-truths anymore. But I'll also do my best to ensure none of you worry unnecessarily. It's a hard line to walk but just know you're with me every step.

To say the least, this month hasn't been "fun." I have great memories of Portland & Chicago. Pups lying with me while I was on bed rest. Friends stopping by with Sudoku puzzles and bags of candy. Or Sara & Jason watching me try to eat solid foods from one side of my mouth during a dinner party. But sometimes, life isn't easy. Not for any of us. The darkness reminds us of the light. The clouds remind us of the sun. And the pain can remind us of the pleasure.

I'll wrap this up by letting you know I just ordered Chinese take-out and today's fortune cookie was... well, just read it. Prophetic? I think so. Not just for me. But for all of us.