What not to say (a reminder).

Look, I know you mean well. But you know what the absolute worst thing to say is when someone tells you the medical situation they are dealing with?

“It’s going to be okay.”

The fact that she is having something checked out in the first place already means it is most certainly NOT OKAY. What it is going to be is, simply, what it is, but it is anything but okay.

I’ve been a Sōtō Zen practitioner for a good chunk of time. In this tradition, first and foremost, we do not do denial. We face things as they are, be it good, bad, or ugly, and we do our best to understand that nothing is all one thing or another. There is no black or white; it is all shades of grey*. And that’s okay; and we fail, sometimes miserably, sometimes daily. And that’s okay too.

But please. Don’t tell me that what I am facing is going to be okay. It’s going to be a tumor, or it’s going to be a lifelong medical condition, or it’s going to be something completely different that the universe has not yet revealed to me. It is not – I repeat, not – going to magically disappear. And that, frankly, would be the only possible “okay” outcome. Which is not gonna happen. No. Not a chance.

However – it’s going to be dealt with to the best of my ability, and to the best of the abilities of my collective medical team. And while all of that, in and of itself, is “okay,” what it will be will be challenging and potentially messy and fraught with anxiety and frustration; all of which I am certain will, over time, prove to contain a few blessings amid a whole hell of a lot of prickly thorns.

But let’s be honest here:

It will not “be okay.”

Okay? Okay. Thanks.

(I’ve addressed this previously here, as well as a few other cliches that just really don’t help anybody. But this week, the winner by far is “it’s going to be okay.”)

*Which, coincidentally or maybe not so, happens to be my favorite color.
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Don’t want to speak too soon, but…

… I just got off the phone with my primary care doctor, who called to read me the AVS results. It was a cruel joke of an ordeal involving my cell phone cutting out every thirty seconds or so, combined with my dyscalculia (diagnosed in college! really!!) causing me to write everything down wrong, but there were two main takeaway points that I hope hope hope are accurate:

  • He believes the procedure was done correctly this time.
  • The left to right ratio was 18:1 showing the abnormality on the left side.

He’s not the final word; that would be my nephrologist, who I don’t expect to hear from until next week at the earliest. So I can’t say for certain that any of the above is true and correct.

But I can say I sure hope it is.

Waiting waiting waiting.

Tomorrow marks three weeks post-AVS. As of today, I know – nothing. Zip, nada, bupkis. My primary care doctor said he’s going to try to see if he can dig up anything via UCLA’s computer network within the next few days. I’m not holding my breath.

I am, however, making lots of stupid mistakes, forgetting important things, and in general feeling run down and worn out. But hey, perhaps it’s not my fault! According to this study:

anticipating medical test results

affects processing and recall

of important information

No kidding??

One week post-AVS.

I’m not going to lie here – it hasn’t been an easy week. Much like my first AVS, I don’t think I’ve had a particularly bad time of things, but this time around has been a little different. For one thing, I’ve been really, really tired. I mean, stupid ridiculous tired. Ordinarily this damned disease does not have a lot of impact on my day to day life – after hearing the stories of how some people are completely disabled by it, I consider myself one of the lucky ones. I get through the workday just fine and have time left over each day to do the things that are important to me. But this week, not so much. I’ve had everything checked out and nothing is wrong, at least not on paper. There’s no explanation for why I want to do nothing more than sleep, other than “you’ve been through a lot and your body is still recovering.” Okay, fine, I’ll accept that excuse for a couple-three more days. Maybe.

The other thing that’s different this time around is that there’s a bit of bruising at the site on the left where the cannulation was done. Yeah, that left – the one they didn’t quite get right the last time. Plenty of jokes have been made about the bruising being a sign that they got it right this time, and while joking is (in my opinion) the healthy thing to do, I’m a little annoyed. My first day back at yoga did not go nearly as well as the last time – I think I might have felt actual pain a couple of times. And rather than feeling energized afterward, like I usually do, instead all I could do was crash on the sofa. A perfectly good beach afternoon ruined – but I will give myself credit for having the common sense to listen to my body rather than heading up the coast regardless.

So, okay, I’m tired and a bit uncomfortable. Minor complaints. I’m also really really glad I had the chance to repeat the AVS, and – hey how did that happen? – I’m already a week closer to getting some answers. Sleeping a lot may be utterly boring and not what I would like to spend my free time doing, but on the bright side, it certainly makes the time pass quickly.

Or maybe just hurry up.

I’m almost afraid to say anything, but – apparently I *am* scheduled for AVS this coming Friday, 8/19, at the crack of dawn. I’m supposed to get pre-op bloodwork done Monday morning so I *think* this means it’s really happening.

But you know, until I’m getting fitted for my VIP wristband and making bad jokes about whether or not I get a plus-one, I’m not going to believe that it is actually going to take place. Because if there’s one thing that this damned disease has taught me, it’s that expectations are just disappointments waiting to happen.

Hurry up and wait.

For a couple of days there, it looked like my repeat AVS was going to happen on August 19. It’s not, and is now being delayed until “sometime in September” but exactly when remains unknown.

While a part of me just wants to SCREAM at people for how ineptly my whole case has been handled, there’s still a part of me that believes that everything happens for a reason, and that the reason for this is that I want to be good and certain that the spiro is out of my system completely. As of today, I don’t believe it is. I’m still having HELLA estrogen-related side effects. I’ll spare you the details, but let me assure you that it’s not fun.

Which brings me to how I am doing. Quite frankly, not well at all. I know that part of it is what I’ve been put through, part of it is the biochemical disturbance caused by the spiro, and that either one of those things on its own is probably enough to do anybody in, but in combination it’s just too fucking much. The low potassium causes a lot of pain (and a lot of worry about knowing when it’s bad enough to warrant a hospital trip) and the aforementioned side effects are pretty painful too. My head is completely fuzzy all of the time, although I’m happy to report that I haven’t lost anything this week – so far, anyway – so maybe that’s getting better. And then there’s the whole “how long is too long?” question of going through life with a disease that causes uncontrollable hypertension.

There’s not really any point to worrying about what you can’t control. I know this. But I’m convinced that in the last few months this thing has gotten a lot worse – one very real possibility is that the tumor has grown quickly and is producing more aldosterone – but that my medical team is so clueless about it that nobody is acting with any real urgency. I don’t mean this to criticize; I think they are all doing what they think is right to the best of their knowledge. But I’m starting to feel that maybe the best thing to do is to actually go to the NIH under their clinical study and get this thing taken care of.

Trouble is, the only way that could happen is by cashing out my 401K. Don’t think I’m not considering it, because I most certainly am.

Even less.

What I know, that is.

Phonecalls were made to both the endocrinologist and the nephrologist. I’m no more enlightened than I was before.

Here’s the short version: The endo, who has said this before, doesn’t think my tests are indicative of garden-variety primary aldosteronism. But, he doesn’t know what they are indicative of; everything else he has tested has come back negative.

The nephro is convinced that it’s still plain old PA. But, since my tumor is on the LEFT and the tests show the RIGHT is messed up, he doesn’t know what the next step should be.

As for the patient? She is really, really frustrated that the so-called experts can’t even agree with each other.