Thursday, October 10, 2013

Colorado Trip Update

Thank you all so much for waiting so patiently for an update; I'm afraid that it's the nature of the beast when you have any sort of medical drama - long bouts of nothingness in between semi-helpful updates (that tell us something other than what we already know.)

So I have a happy update for you, in payment for all of your amazing support and kindness:

The doctor's office I went to in Denver was something Doug and I had wanted to do before I was even told this is cancer. We learned about this type of approach when you have a medical mystery, through books and online reading. And, incidentally, it's something you can find in pretty much every other state except Utah, for some strange reason.

Nothing new about them. In fact, the direct opposite! Our predecessors practiced nutritional healing and wellness from the inside out, back to Earth's ancient beginnings, when God told us He made plants and animals for the use of man.

In other words, nutrition and inner healing come first in any circumstance. This particular doctor I went to see is actually an Obstetrician who has a much more holistic viewpoint than most I've come across. His staff was amazing and did this huge cellular health scan, complete with tons of confusing numbers and facts.

But in the end, even though we didn't learn anything in specific about the cancer or the tumors, we did learn that if I follow a gluten-free diet then many of the uncomfortable side effects may ease up quite a bit! So there's that, which is already well under way thanks to my sweetly vigilant hubby watching out for me.

Look! All you do is just CHOP the Vegan Food Pyramid through the middle, and voila!
My perfect gluten-free vegan diet. I love simple things! ;)

And also, (here's the other happy part!) he said that while he believes we need to still go see an adrenal oncologist for sure, he feels like in his deepest gut it will turn out that this is NOT a cancerous couple of tumors.

Okay, so the fact is, there are no such things as double functioning tumors in one adrenal gland... that have been documented, or that we've found, that are NOT cancerous. So that means, if this doctor is correct, I would be an even greater anomaly than I already would if it is, in fact, just silly old cancer. BUT that doesn't mean it can't happen!

So, based on the "gut instinct" of our Colorado Obstetrician, I feel that the whole thing went very well. Because it gave me something hopeful to pray for, and something to give you to pray for as well! It's kind of hard to just say a prayer that goes, "Please help Eden not have cancer," when you can have a much more positive prayer that says, "Please bless that Eden's Colorado holistic baby-doctor guy is totally in touch with his sixth sense and bases it off what he's dealt with in his 30-some-odd years as a physician."

Okay I see your point. But you could do a shortened version and it'll turn out just as well. :) This is GOD we're talking about. He understands even me. ;)

And if you're wondering, we had a wonderful time visiting with family and driving through the autumn colors in gorgeous Colorado. Thank you so much for all you guys continue to say and do. You are the answers to my prayers!!!

Tuesday, October 1, 2013

Your Good Buddy Eden is Very Sick

Dearest Friends and Loved Ones,

I have been trying to write this for weeks now… and trying to AVOID writing this for weeks now.
Because there is never an easy way to tell your loved ones that you’re sick.

Yes, it is hard, no matter how sweet technology is, to put the words down in black and white and try to soften the blow.

Anyway. If I asked you to read this, then you are a special person to me in some way. You are someone who has influenced, touched, smacked, ;) or most likely hugged my life in some way… or some combination of the above.

You may be one of several who have wondered what the heck happened to me lately. You might be a blog follower or an iLA (Inspired Living App) friend, or you may have gotten back in touch with me since forever ago… but then… I just sort of dropped off the face of the planet.

To be totally honest I haven’t been well for quite some time, but now we know why.

For the purpose of negating all the endless –but of course, well-meaning—questions and things that would certainly arise after a message of this nature, I will give you the full story, below. But if you don’t like listening to “Mystery Diagnosis” type stories with a fairly unfortunate ending, I can just skip to the end for you, if you’d rather… well, at least I can tell you where we’re at right now; how it ends, really, is a mystery to me, too.

But here it is: I have adrenal cancer. I’ve had one specialist tell me so and she has referred me to one of her colleagues whom she says is the best in Utah (besides herself, of course) for a second opinion. I have two “functioning” tumors on my right adrenal gland and I am – despite my deep and abiding faith in God, because I know that His will is much wiser than mine and so who knows where He wants me right now – I am a little bit scared right now. And there it is, Folks Who Like Shorter Versions. =)

For those of you who would like all the cool deets, read on:


Eden’s (Mondo Mysterious) Mystery Diagnosis Hour (and a Half)

This whole thing began in a hospital in Goodyear, AZ, where we lived almost 6 years ago.

I had been hospitalized for about 48 hours for what they believed was a kidney infection that had gotten out of hand. I had a high white blood cell count, slight fever, severe and constant “flank pain,” in my right kidney, very high blood pressure (hypertension), and a little bit of blood in my urine.

Most of those symptoms could be written off as part of having a UTI, or kidney infection. Not that big of a deal for me really, especially since I’d dealt with kidney stones ever since my first child, Jae, was 4 months old, and I’d had UTIs since I was a little girl.

The doctor, however, suddenly discharged me, stating that my “cultures didn’t end up growing anything”; which meant, in other words, that it wasn’t an infection after all. To Doug and I this was very disconcerting, because, obviously, I had all the signs and symptoms and it HURT. So how could my pee be bacteria free? (Sweet line for a poem?…)

So the nephrologist (kidney specialist) sent me home, but first she said one little thing that would – one day – be seen as a harbinger of doom:  “By the way, we discovered a small lesion [the word for tiny tumor] on your right adrenal gland. You’re going to want to get it checked out within the year, for sure.”

“But we have no insurance,” I said, as if that were her problem. “Doug was just laid off and we’re moving back to Utah. What should we do?”

“Just do whatever you can, but be sure and watch on it.”

So Doug wheeled me to the car and I spent the next nine days curled up in a ball in bed thinking I was going to die from the pain, with absolutely no clue why.

Later that month we drove to Utah for an unexpected custody battle with my ex, and I did my best to force my pain to the back seat for a while. I stayed on in Utah following the court date while my poor husband drove home to pack up the house with my in-laws (I could never thank them enough for that; we’d be without one beautiful daughter, and without everything-you-need-for-a-house, if they hadn’t helped us through that horrible time in our lives. Thank God for them.)

I found a job right away running a gourmet chocolate shop that was located inside a home décor warehouse. An exhausted Doug drove the U-Haul into northern Utah a few weeks later. We found a wonderful home to rent in the east bench section of South Ogden, and settled into our new life.

Doug decided to go back and get his Master’s in Marriage & Family Therapy. So he came to work at the same home décor warehouse, and we spent long days there on our feet, and long nights at home with the kids and LOTS of homework (you guys know I’m an editor, right? Yeeeah. When your husband goes to school, and suddenly he has homework, suddenly YOU have homework. Haha)

I still had the evil, unexplained but intermittent kidney pain to deal with but, amid all the standing for ten hours a day and bending to get chocolates for people, I started to have other symptoms as well.

Back in my early teens, I fell in love with a new videogame, Dr. Mario (speaking of doctors that aren’t necessarily good for you bahaha), and boy did I love that game. My brother Robbie and I would play it until our eyes started playing tricks on us… that is, I really started seeing things. I would finally pull my gaze away from the TV screen and look out the window to my left, only to discover that the many pine trees in our back yard appeared to be moving swiftly in and out, in and out, almost as if they were being zoomed by a camera. Or more like a camera on steroids.

It was terrifying because my whole body would react and I would get violently ill, feeling as if I could throw up, pass out and die all at once. I would try to close my eyes, but then I would see terrifically bright flashes of light, and again, get dizzy and almost pass out. After a short while, these effects began to take place anywhere at any time: after dinner, while I was trying to go to sleep, at school during a quiz… just, wherever. As it turned out, the doctor said, I was having “petit mal” seizures. They were happening due to my love affair with the bright lights and repetitive motions of those deceptively colorful pills on Dr. Mario.

He suggested, much to my dismay, that I never play those sorts of video games (i.e., Tetris, etc.) again and, because my seizures scared me so badly, I gladly acquiesced. Sure enough, they went away forever… Or at least until almost two decades later, when I began my seemingly innocuous job as manager of a tiny chocolate shop in Utah.

One day I looked down at the cash register to ring someone up, and when I looked up at her and smiled, the cash register came with my gaze and the whole world started to spin. The floor looked like it was trying to rise up and smack me in the face, the rest of the store looked like it was on that strange camera-zoom thing… But I had to work. We had no choice.

So I didn’t say anything and tried to act like I was semi-normal. (Yes. I hear you. We all know that “semi-normal” I am NOT. Heheh, so it wasn’t the easiest thing to do, but I did my best anyway.)

Plus, despite the horrible feelings the “mini seizures” gave me, they were always short-lived, like 5 or 10 minutes long, and so they were long gone before I could get to a doctor. Plus, a very important factor: we had no insurance anyway.

So, over the course of the following year, I ended up in the emergency room at least a dozen times with severe kidney and abdominal pain with severe high blood pressure, high white cell count, and often “a trace of blood” in my urine. Once in a while I turned out to have a legitimate UTI or stone, but most often the doctor would send me home with a report full of generalities and question marks.

Fortunately for me at the time, the OB/GYN who had delivered both Jaeden and Weston (and got them here miraculously, too, considering the fact that my darling body does about as well with childbirth as it does with rare adrenal disorders) attended the same church services as we did, and he was kind enough to take me under his wing and – without charging me –prescribe me several different hypertension medications until we could get the blood pressure under control. The thing was, we never did.

My parents bought me a high-quality home-use blood pressure cuff, and I immediately got it calibrated at my OB’s office and found it to be perfectly accurate. We took my blood pressure all the time, especially when I would have my strange “seizure” attacks, whatever they were (we still don’t know, if you can’t tell by the way I keep calling them things that begin and end with quotation marks) and during and after the attacks it was especially high, but it never dropped below 200s over mid-100s. In fact, when I took any hypertension medicine it seemed to be making things worse!

We finally spent a hard-earned hundred bucks to get me in with a family physician that had helped when my little sister Aspen had been misdiagnosed and almost killed because no one had seen her horrific case of scoliosis and the fact that it was crushing her heart and lungs, back in her early teens. Because he had saved her life by thinking outside the box, my mom suggested wisely that we get me in to see him. So I went, and when he heard my list of ailments and went through my extensive ER records, he was gravely concerned. He began to rattle off a list of tests he wanted to put me through, but I stopped him short.

“Dr. Christiansen, we have no insurance. It was all we could do to get me in here to see you.”

He was very kind and decided to run me through whatever tests his small clinic was capable of performing, and said they would just bill me and we could pay later, but that we had to get to the bottom of this, because walking around with my blood pressure that incredibly high, could kill me any minute.

I knew this to be true and did what he told me. He asked me to go home and do all the research I could on my own, and then when I could afford to, return with my list of options.

I went home, did a boatload of research, and waited until I could pilfer another hundred-dollar bill from our meager resources. When I came back, my list was whittled down to only two possibilities. The amazing thing was, he agreed, and said we would be testing for those. “But,” he said, “I’m actually kind of surprised you didn’t add the possibility of adenocarcinoma.”

“Well…” I said, “It just seems like it’s so rare and I didn’t want to sound all melodramatic.”

[Side note: I am a very strange person. If you know me, which you likely do, you already know this. =) So it will probably not surprise you to know this:  I don’t like to tell doctors what’s wrong with me half the time, because I’m embarrassed, and afraid they’re going to think I’m exaggerating or malingering. You have to admit that I’ve had a lot of ridiculous stuff happen to me, especially for having lived such a short life so far. I’m not like, 93 years old, and I’m relatively healthy… Or at least I *look* like I am. So it’s embarrassing! Whether the person is a doctor or just some guy on the street, it’s embarrassing. OK, that’s all I had to say.]

Dr. C. raised his eyebrows and smiled, and told me to add it to my list. We went over the other two possibilities, which could only be knocked off as suspects by putting me through a series of currently unaffordable tests. So he cringed and said, “Eden, please do what you can. Ask for help, keep trying to get insurance, and whatever you do, keep an eye on that adrenal gland. I have a very big suspicion that we’re dealing with an early case of what will one day be a bad case of adrenal cancer. It is rare but so are your symptoms and your numbers.”

That scared me, but what could I do? Get on Facebook and ask everybody to please pitch in five bucks so I could get some hideously expensive medical tests that may or may not tell us what we needed to know?? Would YOU?

So I had no choice but to go home and wait until either my kidney blew up or several thousand dollars that we didn’t need for bills dropped out of the sky. In the meantime the symptoms grew steadily worse, and the blood pressure was very strange. It would go up, up, up, and then suddenly be only 150/100 for a week (which was low for me.) Then it would go back up again.

I remember once we even developed a theory that it was because of the inversion layer that our Utah air comes up with every winter. The air quality gets bad and somehow the pressure tips all the bad stuff down to our level and we breathe it in. Asthmatics, heart patients and hypertensive folks usually fare the worst during these periods. We began to chart my blood pressure on a calendar.

However, when Summer came around again and the wind was blowing so there was definitely no inversion stuck at our level, we had to give that theory up for good. It was also about this time that I started to get tired. Really, really tired. I needed like 12 hours of sleep just to stay relatively alert at work the following day. It got so I missed a lot of church and rarely, if ever, spent time with my friends.

There was this really kind gentleman in our congregation at church who had been keeping an eye on our family for a while, and he noticed when I stopped coming to church on a more regular basis. Our neighbors were all quite wealthy and loved to help where they could. I remember one year they brought over literally thousands of dollars’ worth of Christmas presents for all of us as a “secret Santa” thing. It still brings me to tears. But, like I said, I’ve always been *very* close to the cuff about my medical issues. [Most of you are probably surprised I’m even telling you now that it’s as serious as it is!]

Anyway, this particular gentleman had been watching a little closer than most, and one day came right out and asked what was going on with me. So, in a unique act of social vulnerability, I told him.

As it turned out, he had a good friend who was an Internal Medicine specialist, and this amazingly kind man wanted to pay my way to see him and get all the tests that doctor deemed necessary. To this day, even though nothing came of it at the time, I still feel like my friend was a sort of guardian angel. What a wonderful thing to do for someone!

When you are sick but you don’t know what it is that’s killing you, and someone shows you that kind of effort on your behalf? It brings you to tears, even years later when you’re typing about it in a letter to your friends.

Unfortunately, though, that doctor only found one thing: that the “lesion” was now large enough to be referred to as a “tumor.” He seemed to be the sort to kind of wave his hands and say, “Oh, it will be okay,” to just about every patient he saw, and I didn’t want to say this to my friend at the time, but he obviously had already formulated an opinion before I ever stepped through his office door.

Why he didn’t think we should worry about it is beyond me. My blood pressure continued to be in the very most dangerous of danger zones, which in and of itself is a deadly problem. And I continued to hit the emergency room about once every couple of months in so much pain I couldn’t walk. Don’t they tell us that pain is a red flag that something is going on? Oh well. If no one would listen, I wasn’t going to keep pushing the issue. I climbed further inside my shell. [Can I just tell you this? Please, if you are going through something similar or ever do in the future, please continue to reach out to people. Please keep trying, because it could one day be too late!!]

Finally, I just couldn’t stand on my feet for 12 hours straight anymore. I let go of the chocolate business, and got a great job as the graveyard shift girl at a residential addiction recovery center. I had kind of followed Doug to HIS employer this time, as luck would have it. He was an Intern Therapist there at this point.

I could kind of sit or sometimes lie down on the couch in the rehab living room all night with my laptop, writing on my beloved blog and reading those of my friends. I only had a couple hours’ worth of clerical and office chores, and then I just had to go check on the patients every hour or so. Then, in the mornings, after more chores, I led the patients on “meditation walks.” Then I’d go home and sleep a few hours until Jaed got home from school. I loved my job and it seemed that with the change in physical demands, I wasn’t having as much trouble with the ground trying to jump up and hit me in the face anymore.

And did I mention I loved that job? I, loved, that, job. So much.

But I was still tired and, unfortunately, as most grave workers do, I began to go from tired to more of a bone- crushing, teeth-grinding exhaustion, which, no matter how much sleep I got, never seemed to go away. BUT something good also happened. Because I was a full-time employee with a “real” job, I got health insurance again, for the first time in four years. So I went to the doctor, but because we’d rung up such a giant bill with Dr. Christiansen back a few years ago, they’d sent us to collections eventually, and now I was not able to be a patient there because of that. And that was very sad, because it was the reason that nobody figured out what was wrong until now, where we are at this late hour.

At the time, I had been having female issues that I’d dealt with since I was a teenager, and it was time to replace my IUD. So before I got into the testing and long list of specialists that were sure to come where this Mystery Diagnosis thing was involved, I had to take care of the girly stuff. And boys, if you don’t understand this part, don’t worry, it will all be over soon. ;)

Anyway, also at the time, Doug and I both had been feeling overcome lately with this crazy hunch that we had one more baby that was supposed to join our family. It was awful! Haha that sounds so nice. What I mean is, it just seemed so highly improbable and so out of the picture, that we had to pray about it, and re-pray about it, and we did so, pretty much dozens of times. But finally we were convinced. Still, we only gave it one month.

We decided that when they took out the IUD, we’d go ahead and leave it out for one month, then put the new one back in if nothing happened. I don’t know about you, but most people try to get pregnant for a few months before anything happens. We took a total of two weeks. Of course you couldn’t prove it yet with a test, but I *just knew* when it happened, just like I had with Weston (what can I say? I know my body) and sure enough, it was true. When we went into the doctor’s office to either have my new IUD put in or find out I was pregnant through a blood test and ultrasound, sure enough, there was our little peanut. And that was NOT awful. =)

And strangely, and I like to think it was (obviously!) a God thing, my blood pressure suddenly dropped down to 149/70. And it stayed that way for the ENTIRE, NINE, MONTHS.

Yes, it’s true. A medical miracle, folks. Pregnant women are known for usually having higher blood pressure, and especially toward the end you have to watch out for it, but mine stayed steadily low, even by normal women’s standards, straight through the C-section.

[Another Side Note: I should probably ignore my little issue with shyness and tell you about the fact that I ruptured the L5-S1 disk in my lower back when I was two months along, while getting pizza out of the oven. I ended up using a walker and remaining on bed rest for the entire pregnancy too. Yeah. That sucked. BAD. How about I just won’t bore you with all the boring details?]
So, the C-section. The C-section was planned, because Weston had been an emergency one and it’s just what they do next time around. So I got through the whole thing like a champ, Emerson was born with one ridiculously healthy set of lungs, and I was wheeled out of the OR and back to my room.

…Where I would be kept *prisoner* for the next FIVE days. Because my blood pressure suddenly rose to 210/160. And stayed there. And stayed there. And no matter what drug they pumped into my IV, it stayed there.

I kept trying to tell them, “Guys, this is JUST how I AM…when I’m not pregnant.” But they couldn’t believe that I’d walked around like that for the past three years, and it took five days of visiting specialists to finally give up and say, “I dunno what’s wrong with her.” So they sent me home.

I began, as soon as I was feeling better from the surgery, to try a new family practitioner on for size, as Dr. Christiansen was no longer an option; my bill at that clinic was too sizeable and they wouldn’t let me go there until it was paid.

(Ugh and you wonder why I’m embarrassed to talk about medical issues. It’s probably because medical issues go hand-in-hand with financial issues. And poor Doug has always worked his heart out, but we were definitely in a bad way with all my medical bills and his having to change careers the way he did. He used to go out to sea and make roughly ten grand a month. Then he married sickly little me, and… here we were. As an intern, you don’t make a ton of money in ANY field. Once I came home from work we were in a heap of trouble.)

So I tried a new clinic: the South Ogden Center for Family Medicine. Dr. Bledsoe was first on the list. I saw him for almost a year over both the hypertension and other various things that were continuing to be a bother, such as UTIs and those darned chronic kidney stones. At the time, we hadn’t known enough to recognize that those different ailments were actually a bunch of red flags. We just thought I had really bad luck in the medical world. Little did we know. Plus, he kept assuring me that, even though I wanted to, it wasn’t important to figure out what was CAUSING the hypertension, but it was important to get me on whatever drugs would control it.

And so Dr. Bledsoe, despite the fact that my dear OB had been kind enough to try me on EVERY hypertension medication known to man a couple years prior, decided to run me through the entire list… again. “Things have changed in your body!” he said. Oh, and also, he reminded me that “That doctor was just an OB, not a general practitioner. I know a lot more about blood pressure than an OB.” So I took all those harmful medications and they continued to actually raise my BP instead of lower it.

Fortunately, I enlisted another specialist on the job. This guy was a hormone specialist, and because the adrenal gland secretes hormones… (Yeah, believe me, it does. Ask my husband what a 30-something mother of 3 sounds like when she’s had nothing but adrenaline pumped into her veins for the last several years… He has developed the ability to turn the other cheek, let’s just put it that way.)… He was pretty sure he knew what he was talking about. He started running me through the gamut of tests, and by November of last year was getting to the point that he said, “I’m starting to lean toward a very rare form of adrenal cancer. Let’s not get too upset just yet, there are a lot of strange things going on with your numbers; but I’m getting concerned, so don’t you go anywhere.” Like I would!

But. The next time I showed up for my appointment, that December, the secretary stopped me at the desk, stating that my insurance had not paid their office for the entire six months I’d been there, and that I couldn’t go in and see the doctor until they paid something.

I called right then and there, and my insurance lady told me, “Oh yes, we’ll get this paid today!” But since then I’ve learned all their stall tactics and found that the insurance company we deal with is never, ever going to pay my specialist bills. They just don’t. We’re looking into it but how do you afford an attorney to fight the big guns when you can’t even pay the bills they’re not paying?

Let’s just say that I even paid nine hundred dollars out of pocket (and missed an entire house payment, much to the almost-demise of my poor stressed-out family) and was able to see him one more time, at which time he told me he wasn’t able to conclude my condition just YET, but that he was positive about one thing:  I did actually have the numbers for adult-onset diabetes. He just wasn’t sure why. [At the time that didn’t make sense but it does now.]

He also said my white cell count continued to be high and that I continued to have light strains of blood in my urine. But yes, my blood sugars were out of control.

“That’s weird,” I said. “I’m not overweight and I don’t have many of the symptoms of diabetes.” But our visit was over and I never saw him again, because not only did my lousy insurance never pay their clinic (and we are currently in big trouble over that one and another one they didn’t pay) but that wonderful doctor actually left the clinic and moved on to greener pastures, apparently.

I also tried to keep the holistic route involved in this wondrous anomaly. I had gotten great help from some doTerra supplements my friends gave me after I had Emerson, so I began to take those religiously. The story is on my blog, as well. For almost four months they brought my blood pressure way down and even the other symptoms seemed to be backing off a bit. But then one day I got really sick and began throwing up. I threw up for several days and could not keep the supplements down. By the time I felt a little better, they stopped keeping my BP down, even though I was able to take them again.

(Now that I know what ended up happening, I believe this must have been about the time that the second tumor had begun making its entrance. So I bet that’s why I got sick and now there were suddenly TWO tumors pushing all that cortisol and adrenaline into my bloodstream, so no wonder my BP never went back down.)

Anyway, I went back to the family clinic and tried a new doctor there, because I noticed that her office was often a lot busier. (When a lot of people go to a certain doctor, it’s at least a good sign that a lot of people like that doctor. Right?)

Anyway, let’s cut this story short (short? really?) and say this: She was great, she tried hard. But she wasn’t a specialist. She, wasn’t, a, specialist.

IF YOU HAVE A MEDICAL MYSTERY AND IT IS RUINING YOUR LIFE AND IS VERY DANGEROUS BESIDES… PLEASE, FOR THE LOVE OF PETE, FIND A SPECIALIST. What specialist? You ask? Just keep going to different specialists until you find one who says, “I’ve got it! This is what’s wrong with you…” Mmmk?

So in short, over the past five years, what I haven’t told you because this is a looong freaking story and I forgot to mention it but I’m too tired to find the place where it happened… is this:
I also had a mini stroke along the way. I wrote about it on my blog so if you really want to know what a mini stroke feels like, read about it here. It was weird for sure and I hope so much that I never, ever have another. Especially because the doctors tell me it likely will be much bigger the second time around.

Also, what I didn’t mention was that every single time I went to the ER or clinic for a UTI or stones, I’d get the same result. That day they’d find protein and blood in my urine, and a high white cell count. They’d send me home on antibiotics and then, inevitably, 9 times out of 10 some intern who had no idea about my case would call me a few days later and say, “Good news hon. Your culture didn’t grow anything, so you don’t have a bladder infection after all and you can go off the antibiotics.”
After a while that just gets suspicious.

And last but not least, the way they discovered that I now have two tumors instead of the one was this: last time I went to the ER, and they did a CT scan with contrast, and discovered that there are now two tumors, both the same size as the one that was alone three short months ago.

Anyway, the way we finally discovered the actual truth was another long story that I’m too tired to get into, but, again, it was a God thing. I know this must sound totally nuts because I’ve never heard of it and I doubt you have either, but I got a text on my phone from some random specialist’s office (that another specialist to whom I had gone and who couldn’t figure me out, had referred me to.) WOW, ha? So I get this text from the office person saying they wanted me to come in and see their specialist.

So I did, and she turned out to have spent five years in a kidney specialist’s office and five years in an oncologist’s office at Huntsman Cancer Institute, before she opened her own clinic. She is wonderful and I fell instantly, head over heels in love with her. You know what she did when she finally had her hands on all my records?

She told me that – like Dr. Christiansen had originally thought was developing from its infancy four long years ago – I now have adenocarcinoma. She called and corroborated with one of the kidney specialists with whom she had worked and I heard him get all giddy on the phone, all super excited when she told him my symptoms and test results (giddy and exited, as only a *specialist* can get excited, when hearing about a rare and deadly form of cancer.)

I am set to see him this Thursday afternoon for …Yahoo! More tests! And a second opinion.

From what I’ve learned, when you have a tumor on your adrenal gland that is “functioning” (i.e., it causes your cortisol and adrenaline levels to rise up to unnatural levels and create hypertension, super high blood sugar levels [remember the diabetes?] etc.) you need to get it taken care of immediately. It is not safe to leave it. Because if – like me – you let it sit for year after year, it will eventually become malignant. From what I’ve learned so far, anyway.

So now it’s time for more tests, because they will tell us whether that “massive scar tissue” they suddenly discovered on my lungs last time I was in the ER isn’t actually more tumors that have possibly spread from my adrenal gland. Because as it turns out, that’s where cancer goes next when it metastasizes from the adrenal gland: the lungs.


So I’m asking you, friends and family, please, pray with us. If nothing has spread to my lungs and this guy confirms the diagnosis, then I am currently at stage II. Stage Two means there are at least two adrenal tumors OR one that is 20 cm or larger.

There are four stages when you get cancer. I don’t want to be at stage 3 or 4. I don’t. Please pray with me?

And – bonus – this whole scenario has made me so extra humble that I’m even willing to ask for help… I’m willing to ask you for help, IF you can help. Even if all you can do is pray for us.

I don’t want to leave my babies. They are my life and they give me every reason to live. I don’t want to leave my husband; he’s my Dougee Jim!!

My parents, siblings, best friends, ALL OF MY LOVED ONES, I can’t stand the thought. I don’t want to leave YOU. I don't mean to sound selfish but... I don't.

It’s likely, from the sheer number of people with whom I’ve fallen out of touch, that you actually miss me already =) and I miss you, too. I’d really like for us to catch up and have a long, looong ;) friendship from now on. (Or at least once I’m well enough that I don’t sleep 16-20 hours a day.)

I don’t feel ready to move on to that Next Step in the Sky. I KNOW I’m not ready. I LOVE LIFE. I have HUGE dreams and goals to work on and fulfill.

So, I promise to keep you informed and let you know what all these specialists say, as I go to them and as they give me more answers.

I am sorry to be the bearer of such lame news. It was lame to me too. ;) But remember who I am. I am CRAZY positive!!! I will beat this if there is a way to beat it. I am NOT ready to die. And I’m SO ready to start living again!!!!

So don’t let it ruin your day.

I love you guys,

P.S. If you know someone else who has dropped out of your life and you wonder why, or you know someone who always seems to be in financial trouble for some reason, PLEASE DON’T JUDGE. BECAUSE YOU NEVER KNOW WHAT THEY MIGHT BE GOING THROUGH. (And are too ashamed to tell anybody.)

P.P.S. A prayer can go a long way. But I ask that you pray for God’s will in the end, because He knows wassup. He really does. He’s given me so many miracles, that I have no doubt left in me.

I guarantee that if you pray for His will, the best things will come, no matter how they look to us at the time.

Wednesday, May 15, 2013

Putting it Out There

So, as per my usual habit, I have stayed away from writing here largely because I am afraid. Afraid of what? You might be wondering. 

Afraid of not saying the right things?

Afraid I will say too much? Too little?

Afraid of being mocked, heckled or shamed like no one has ever been shamed in the history of all mankind?

Or maybe I'm afraid that - once I type it and hit 'publish' - it will all be out there in black and white, permanently etched upon the slippery insides of the elusive, darting cloud we call the Internet, from whence it can never be fully retrieved.

...Perhaps I'm afraid of all of the above, but actually, mostly none. 

What I'm really afraid of more than anything else, is the intensity of what I feel when I write. It is an emotion - no, a pile of emotions - that are altogether too close to what you feel in your most dramatic of real-life moments; the kind you wish you could remember forever... 

...As well as the ones you wish you could just forget.

All through my early twenties I was SO proud because I had this ridiculous running tally of how long I had gone without crying. As if that were some sort of super-human accomplishment. I would raise my chin just a little too high and say, "I haven't cried in (x amount of) years..." and look around peripherally to see whether I'd stricken my intended chord of awe and inspiration.

What's funny is, I don't remember ever noticing that anyone was impressed. Rather, to the eye of my recollection they all appear bored and a little annoyed maybe. Hm.

The fact is, in my mid-twenties I turned my entire life around and with it, I discovered that it was a good thing to cry. At first I released it all in a torrential flood and thought I would never, ever stop. I cried over my soon-to-be ex-husband, what I thought we could have, would have, should have had... I cried over how devastated my daughter was destined to be her entire life because of the changes I was making (while realizing that if I didn't make those changes she would be just as traumatized if not all the more.)

I cried because I hadn't cried for so long, I had half a lifetime of tumultuous, riotous, and ultimately horrifying memories that NEEDED to be cried over. Those memories are too bad to forget, though. They have to be written about. 

And I know this and that is why I have to tackle this fear thing that rears up each time I near a keyboard.

Today, my life is wonderful in all its day-to-day glory. I have an amazing husband and all my children - including said daughter - have turned out more beautifully than I could ever imagine or even come close to taking credit for (I give the credit all to them and God.) 

And I get on my knees every morning and every night and I thank Him that I get to have this life; the kind where you get to be annoyed because your husband leaves hair all over the bathroom sink when he shaves, where you get to yell at your kids because they just walked on your newly cleaned floors after traipsing all over the newly fertilized front lawn.

But in all its normalcy and regular-ness, today's life of mine is not complete. No, not at all. Because I've become a procrastinator in the worst way. 

Tell me something. If you had experienced the equivalent of 300 years in your short 30-something life, wouldn't you think it fair that you share what you'd learned with those out there who are born into similar circumstances? So that they might make it out of the pain earlier than you did? 

So that they'd be armed with the knowledge that "someone else in the world gets me; she's been there."

Maybe I'm just being cocky and thinking I've got so much to offer and people will read my stories and say, "Pfft. That didn't happen/can't happen/couldn't have happened to someone like her, at least." And so they will walk away without hitting 'share' and sending it to their friends so that some girl, somewhere out there, who is going through abuse, torture, being held against her will, whatever atrocity has got her... So she won't ever get to learn that she's not alone and she can save herself.

Well it's not being cocky. At least, I don't see it that way. The Lord was the One who was there with me through it all and I give all the credit to Him. Maybe a teensy bit to myself. But I'm not doing Him or my experience, my stories any justice, not doing anyone any good in return, if I don't tell them out loud.

My stories cry to be heard. They beg and plead with me each night as I toss and turn, shock me awake in cold sweats of panic. If I don't tell them, I stand responsible if someone out there feels like she should just give her situation one more chance. One more try. 

And what if it's her last?

If she could have stumbled across a story on Pinterest or Twitter, about a girl in a similar situation who GOT STRONG and TOOK CHARGE of her life? But she didn't stumble across it and now she's just another statistic?

Uh-uh. I don't give a shizzle what ANYBODY thinks. I'm doing it.

I WILL write my stories and publish them and get them out there, far and wide, the best I can. And there it is.