Two years (!) post-adrenalectomy.

Two years ago today, October 13, at the ungodly hour of 4:45am, my friend C took me to the hospital to have my adrenal tumor removed. (You can read all about that day here.) Two years out, I can say it was one of the best days of my life – I was given a second chance and I have tried, every day since then, to express gratitude for that in one way or another. Some days I do better than others. Some days, frankly, I fail miserably.

I was a bit late last year with my anniversary post. On this day last year, my cat Mischa, who had been my companion for 15 years – the duration of my illness – died, and although it was my one-year anniversary of having a second chance, it felt odd to celebrate it when I had lost the longest-term companion I had ever had. A year later, I’m still struggling with this, and a few other things as well.

So, some numbers first. I’ve had no bloodwork in… oh, probably far too long, but my doctor is on board with my decision to not be a human pincushion unless absolutely necessary. In December I may get a BMP in the name of science, maybe. But for now, the only numbers I have are: BP average 120/75, with a recent low of 112/72; weight steady at 110. No signs of the disease coming back in the other adrenal, no signs of the metabolic disturbances the tumor caused – all good. No headaches, no palpitations, no evidence that my potassium is anything other than where it should be.

As noted in previous posts, I’ve had some ongoing pain issues with the incision sites. While I’ve been back to my usual activity full force since it was determined to not be a hernia, the pain has come and gone but has not gotten any worse. This is something I can totally live with – as long as I know that my guts aren’t going to fall out, I think I’m good 🙂 I’ll go days with no pain at all, but every now and then it will hit me hard. The treatment? Lie around on my back doing nothing for an evening. I’m always, always pain-free the next morning.

So, in terms of physical health, two years after surgery I am doing absolutely fine, thank you. But there is a bit of a downside – when one is doing absolutely fine, one has to move on from the purely mechanical work of dealing with the body to the much dirtier and messier work of dealing with the mind. Or not, I suppose, as one chooses, but being inclined to look inward, I’ve made a few observations.

For 15 years of my life, I was the girl with the mystery illness. It was never an identity I would have chosen for myself, but it was the one I had. Every minute of every day, whether or not I realized it – and those around me for sure DID NOT realize it – meant dealing with said illness. I was really, really sick, and my healthcare was, for 14 of those 15 years, abysmally mismanaged. And while I sensed that, I didn’t know that at the time. I also sensed that I was going to have a very short lifespan, which would have been true had my current doctor not come to my rescue. While some people might have used that as a reason to do everything they wanted to in as short a time as they could, I just… kind of tuned out. I had no energy, I had headaches all the time, I didn’t want to talk to anyone any more than was necessary. Given my choice, I stayed home with my cat and my ukuleles and my enormous music collection and my stacks of books from the library. Now I’m trying to make up for some of that, although quite honestly, those remain among my favorite pastimes. The difference, I have to keep reminding myself, is that now I have a choice.

Those 15 years were roughly one-third of my time on this planet. The identity and the outlook that I adopted during those years were different than that which I had had before I became ill. Once my illness was confirmed, it was easy to remove the cause of it – the tumor. What was left behind, though, was the pain, not in a physical sense but the pain of what I had lived through for the previous 15 years.

Two years later, I’m only now beginning to deal with this. I’m making progress, but I get impatient. While I know intellectually that what matters is the here and now, I’m still caught up in anger over the past – the doctors who failed me, the friends and relations who had no empathy for what I was going through. There were… a few, and I have cut my ties to them. My anger also goes out to those who went out of their way to be useful to the sick girl, but immediately distanced themselves when they were no longer “needed.” I try to understand that this is about them and not about me, but still, it hurts. Of those who spent time with me in the hospital, only two are still in my life. I have no words for my gratitude to both of you. No words.

All of that to say – while the adrenalectomy was, and remains, a gift and a miracle, it was not magic, and it did not solve all of my problems – nor should it have been expected to, and it wasn’t. I just wasn’t prepared for the mix of emotions that I’d be dealing with in the years following, but I look at it this way: I spent 15 years of my life trying to figure out how not to die. Now that I’ve got that bit solved, it’s going to take some time to figure out, exactly, how I want to live.

Reader beware.

I’m not going to name it or link to it, as that would add legitimacy in Google’s eyes, but – there’s a blog out there by a patient with an adrenal tumor that has recently come to my attention, and frankly, I find it really disturbing. That being said – consider the following to be just my opinion; what works for me may not work for you, and vice-versa. What I believe may not fit your belief system, and vice-versa.

Once again, the following opinion is mine and mine alone.

The blog’s author claims that she was scheduled for surgery but then was pointed to a nutritionist who could “starve her tumor” via a dietary approach, so she called off her surgery. She provides the nutritionist’s contact info, but it is ambiguous as to whether or not she is actually trying to sell his or her services. She provides some detail about the diet, which looks like a hybrid of Paleo/Primal eating combined with some herbal stuff. There is nothing wrong with any of this per se; as most of you know, my diet looks pretty much like this and I believe most PA patients could benefit from ditching processed foods (this means you, bread and pasta and baked goods!) and eating real foods and more vegetables. BUT – and this is a BIG BUT – I would never, never claim that it will “starve a tumor.” Because you know why? That just isn’t good science.

I’m no doctor. Heck, I don’t even play one on TV. But I do know that a tumor is a genetic mutation, and your genes don’t care if you are eating green kale smoothies or Swanson’s TV Dinners – if you lose the gene lottery, congratulations, you have a tumor! And while what you eat can influence how that tumor behaves, it will not – I repeat, it WILL NOT – make the tumor go away.

Most of us with PA learn that sodium makes us feel like crap. This is because it provokes the tumor to produce more hormones which make us sicker. Similarly, the type of breast cysts that I have are believed to be influenced by estrogen, so I minimize plant estrogens (soy products) in my diet. But in both cases, elimination of dietary sodium or dietary estrogen will NOT make the tumor or cyst go away; it will just minimize the damage done.

Thanks to my food intolerances, I ate a diet very similar to the one addressed on the blog-that-shall-not-be-named for close to 15 years while the tumor was still in my body. And outside of some misguided side trips involving hypertension meds before I actually had a correct diagnosis, I got by without medication most of those years. While I have no way to know if the tumor got bigger, I do know that as the years passed, my symptoms got worse and worse, and by the summer of 2010 – 13 years after my first ER visit for PA symptoms – my low potassium came close to killing me (saved only by ER visits and electrolyte drips) regardless of how many heads of kale I ate.

I may have some added difficulties to a dietary approach to tumor management thanks to damage caused by a lifetime of undetected celiac disease – I am unable to fully absorb nutrients from food like a “normal” person would. So this may complicate things, but – in my own experience, combined with the experience of the dozens of other PA patients I know from the Yahoo group, managing an adrenal tumor via diet alone is not a one-size-fits-all solution. While a processed-food-free, low sodium, high potassium diet is a GREAT idea for ANYONE, it is not a magic bullet that will “starve a tumor.”

The aforementioned blog – okay, the blog-that-shall-not-be-named – appears to me to be sketchy enough that nobody would take it as actual medical advice. But then I’m trained in this stuff – I’ve got a master’s in Information Science and I keep a roof over my head by knowing how the Internet works. And I am constantly surprised by those around me, often with advanced degrees in fields other than my own, who are unable to discern between a legitimate website and one that is… less than legitimate.

My intent here is not to bash what works for someone else – just to point out that, with our often-misunderstood condition, one should use extreme caution when following the advice of others. (Including my advice!) Think critically and think analytically. Keep science and facts in mind. And with your tumor, as with life itself – if it sounds too good to be true, well, I hate to break it to you but it probably is false.