The aftermath of Cushing’s…what the hell is wrong with me now?

Just to give some context for what is to come, I am going to try and summarize where things stand for me right now.

During the process of recovering from pituitary surgery for Cushing’s last February, I started to develop increasingly severe back pain in May.  I had radiofrequency ablation (a doctor sticks a probe into the spinal facets and burns the nerve endings off) twice to help reduce my pain between June and November.   I had an incident in mid-September (that I thought was an adrenal crisis) which ended with a seizure in a local ER.  And after the trip to the ER, things started to spiral downwards again.  I was initially worried Cushing’s had come back, but this just didn’t feel like Cushing’s…

So it was time to take stock and start investigating again.  Throughout the spring and summer, the only abnormal labs I had were consistently high Alkaline Phosphatase (ALP) results.  This can indicate bone or liver problems, but related testing indicated mine was pointing towards bone.  I also had a few high N-telopeptide labs – combined with my high ALP, this pointed to high bone turnover which is not normal for someone in their 40s.   Since I was having bone pain and since these labs were abnormal, I started doing some digging around to try and figure out what this could be.   The list of things I found included bone diseases like Paget’s and osteomalacia (caused by a Vitamin D deficiency), but neither seemed to fit.  Other things on the list were various cancers (of which I had no other sign) and hyperparathyroidism.  Primary hyperparathyroidism (HPTH) is caused by a tumor in the parathyroid gland that produces excess parathyroid hormone (PTH) and the excess PTH stimulates your body to find calcium and dump it into your bloodstream.   If you substitute pituitary for parathyroid, ACTH for PTH and cortisol for calcium, you basically have Cushing’s – so I knew this drill pretty well already.  I needed to start getting repeated calcium and PTH measurements to try and rule this in or out.

I did notice that my calcium fluctuated a lot while I had Cushing’s – and calcium (in a healthy person) is supposed to stay in a very narrow range.  So this looked suspicious to me.  I also noticed that while I was getting testing for Cushing’s my PTH was at the top of the normal reference range on a few occasions.  My research also indicated that cortisol could suppress calcium – so maybe this is why when I tapered off hydrocortisone (essentially a synthetic version of cortisol that is taken after surgery until your pituitary can regulate cortisol properly again) my bone pain started?  Could it be that I also had a parathyroid tumor and that the excess cortisol I had during Cushing’s was hiding it?

The only way to test my theory was to start testing my PTH and calcium. And so this is what I did in September 2014.  The Wizard ordered a round of tests and lo and behold, between June and September my calcium had jumped from 9.3 to 10.3.  Calcium doesn’t do that in a normal person and according the website of the parathyroid surgeon  that does more of these surgeries than anyone in the US (www.parathyroid.com), people in their 40s should NOT have calcium in the 10s.   Typically, PTH is also high for patients that have HPTH.  Mine was not “high” (it was in the 20s), but it was still a little “too high” given my high calcium readings – when calcium is too high, PTH should be really low so your body stops dumping calcium in your blood.   Even though I didn’t have a smoking gun, the Wizard agreed to humor me and we did several sets of calcium and PTH tests over the next few months.  They all indicated I had calcium levels in the 10s or very high 9s.  And my PTH kept steadily increasing too, from low 20s up through the 30s.

I was pretty convinced I had a parathyroid tumor by now.  In addition to my labs, my new and progressing symptoms fit HPTH as well.  I had a lot of bone pain.  Despite starting to run and go back to work between May and September, I was getting extremely fatigued again.  Despite growing back a lot of the hair I lost during Cushing’s, I started losing hair in chunks the size of a quarter.  My blood pressure had almost come completely back to normal after Cushing’s, but now was fluctuating between normal and 150/100.  All signs of HPTH.  Unfortunately, all signs of 100 different diseases too.  But just like when I had Cushing’s, the symptoms and the labs really did point in the direction of a parathyroid problem.

And if I did have a pituitary tumor and a parathyroid tumor?  That pointed to much more serious problem:  Multiple Endocrine Neoplasia, Type 1 (MEN-1).  MEN-1 is a genetic mutation that predisposes patients to developing neuroendocrine tumors (NETs) in the pituitary gland, the parathyroid glands, and the pancreas.  Having tumors in 2 out of the 3 locations means you will be diagnosed with MEN-1.  There are also genetic tests for MEN-1, but the tests only identify a known mutation in 60 percent of cases.  MEN-1 sounded like pretty bad news and the more I read about it the more I really hoped I didn’t have it.  But if I did have it, I wanted to make sure I found out about it as soon as possible so I at least could find tumors and remove them as fast as possible.

And so by November, with my growing collection of calcium and PTH labs in hand, I was on a mission to rule HPTH (and MEN-1) in or out.  If I had MEN-1, I would have to begin figuring out if there were other tumors lurking around that needed to come out and begin a lifelong process of checking for tumors and removing them.  If I didn’t have HPTH?  I was back to Square 1 and would have to start down another path to try and figure out what was wrong.

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Happy Anniversary, Cushing’s

Dear Boris and Natasha K:

At precisely this time last year, Dr. McC was busy removing you from my pituitary. You made me fat, you destroyed my body, you made me stop working and running and doing all the other things I loved to do. But I killed you. And I am going to keep getting better while are going to remain in a little specimen jar at the back of a closet. So technically, I win.

I am feeling a little sentimental today, and so of course I couldn’t help but think of our song:

Love, Me

P.s. You left some of your loser friends in me. Tell them they are next.

Murphy’s Laws for Cushing’s Disease*

1.  If you have 28 new symptoms, 27 of them will be vague.

2.  If there are 18 diseases consistent with your vague symptoms, you will be tested for 17 of them.

3.  If you rule out the first 17 diseases, no one will test you for the 18th one (Cushing’s) as it is too rare.

4.  If you think you have Cushing’s and are overweight, you will be told you don’t have Cushing’s – you just need to eat better and exercise more.  If you think you have Cushing’s and are thin, you will be told you don’t have Cushing’s because Cushing’s patients are overweight.

5. If you do get tested for Cushing’s, the test will come back negative.  Twice.

6.  When your tests for Cushing’s finally come back positive, you will be told you don’t have Cushing’s but you are definitely stressed out.

7.  If you have a pituitary tumor and get an MRI, the MRI report will say you don’t have a tumor.  If you have a bilateral adrenalectomy to treat Cushing’s, the CT report will say both your adrenal glands look great.

8.  If you can’t get pregnant as a result of Cushing’s, the only thing you will fit into are maternity clothes.

9.  If you get Cushing’s you will stay thin from the kneecaps down, but you won’t know that because your belly will be blocking your view.

10.  The number of times you will be told to go out and get some fresh air is inversely related to the probability you can get out of bed.

11.   If you get Cushing’s, your rate of weight gain will be inversely proportional to the number of calories you consume.

*Special thanks to my friend Jessica for her contributions to this post.

You’re so vain, I’ll bet you think this post is about you

Cushing’s is a pretty brutal way of coming face-to-face with your vanity.

Cushing’s syndrome is what happens if your body is exposed to excess cortisol.  You can get Cushing’s by taking glucocorticoid medications (like Prednisone) for an extended period of time.  Or you can get Cushing’s from a tumor.   Tumors on the adrenal gland produce cortisol directly.  Other tumors, either pituitary tumors (Cushing’s disease) or tumors in other locations such as the lung (ectopic Cushing’s) produce the pituitary hormone ACTH which in turn stimulates the adrenal gland to produce excess cortisol.

If you google Cushing’s, invariably you will come across a picture something like this:

Cushings

This picture gives you a pretty good idea of what Cushing’s does to the human body on a superficial level.  You gain a lot of weight, typically in your midsection.  You get a “moon face” which means your face gets really round and puffy.  And you get a lump of fat at the base of your neck, often called a “buffalo hump” because, well, it looks the humps buffalos have on their backs

buffalo

Cushing’s also often causes people to break out in cystic acne and very often to get straie – dark red or purple stretch marks – on the abdomen, hips and other locations.   Your skin gets really thin and you often lose hair on top of your head too.  Not all patients experience all of  these changes in their bodies but most people experience at least some of them.

This picture gives you a good idea of what Cushing’s does to your appearance.  What this picture doesn’t show is how these changes affect patients emotionally.  As you start to get sick, the body you have been living in since birth begins to transform before your very eyes.  At some point, you look in the mirror and you no longer recognize the person staring back at you.  You don’t feel like yourself and now you don’t look like yourself either.

It might seem that the last thing you should be thinking about when living through a serious illness is your appearance.  But Cushing’s made me acutely aware of how central my physical appearance is to my identity.  I used to be thin and fit.  Within the blink of an eye, I became bulky and unhealthy.  I used to have thick, lustrous hair.  Now, my hairline is receding.  I used to wear size 2 dresses to work everyday.  Now I wear maternity clothes as they are the only thing that comfortably fit over my belly.   I used pride myself on not caring too much about my appearance.  Now I obsess about it all the time.

How to spot a monkey in a white coat

Monkeys in white coats are everywhere.  You have probably seen many monkeys in their natural habitat – mainly in hospitals and clinics – but you might not have recognized them as such.

So what is a monkey, you ask?   A monkey is a creature in a white coat that can only diagnose your illness if your labs are 10x the maximum of the reference range and you have a tumor the size of a basketball in your neck.   The difficulty in recognizing a monkey is that monkeys closely resemble real doctors from a distance.   It is only with careful examination up close that you will be able to truly discern when you have encountered one.

Let me give you an example from a recent encounter I had with a monkey to help highlight this point and to help you, dear reader, spot monkeys in your own medical travels.  Last week, I had an appointment for a surgical consult with someone I believed to be a well-regarded doctor at a hospital near my home.  Prior to the appointment, I faxed his office about 30 pages of radiology reports and lab results.  I also sent him a symptom list, which included bone pain, extreme fatigue (I have been back off work now for over four months), large amounts of hair loss, and some pretty nasty digestive problems.

It became clear pretty early in the appointment that I was in the office of a monkey as this doctor displayed several hallmark signs:

#1 – Monkeys fail to read or consider as relevant any tests not conducted by another monkey.

This should not come as a surprise to you, as monkeys have difficulty reading.  It also should not surprise you that monkeys are not very good at listening either, so don’t be alarmed when nothing you say about your symptoms seems to register.

#2 – Monkeys believe other monkeys are gods, including monkeys that have already misdiagnosed you.

I always suspected this was the belief of some monkeys and that this was the major reason monkeys have proven themselves to be unhelpful, as this sort of belief tends to go hand in hand with an inability to actually hear what a patient has to tell you about their own body.  Never in my wildest dreams did I think I would get to hear a monkey say this out loud!   [I really felt like Jane Goodall at this point and am still pondering reaching out to National Geographic.] When the monkey in question asked me if I was a patient of Dr. X and I told him that I was not, because Dr. X said I didn’t have Cushing’s when it turned out I DID have Cushing’s, he laughed and said “well, Dr. X is a god when it comes to Cushing’s.”

That’s right folks.  The doctor that misdiagnosed me last year is a god.  I don’t know about you, but for the last 40 odd years I have been operating under the belief that gods don’t make mistakes.  And that leaves me in a difficult situation because I have just been told that the doctor that failed to diagnose me with Cushing’s last year was a god!  What is the logical conclusion I should draw from this exchange?   The monkey, sensing my obvious confusion, goes one step further, just to make sure I am getting the message he is so subtly trying to send me.

#3 – Monkeys will tell you they don’t believe you had the DISEASE YOU WERE DIAGNOSED WITH AND CURED OF LAST YEAR.

The monkey concludes by telling me “If Dr. X doesn’t think you had Cushing’s I doubt that you did.” He spelled this out because monkeys don’t think patients are very smart and he wanted to make sure I got the message.  And boy, did I get the message!  A disease I was diagnosed with by a real doctor, had surgery for at another hospital, and have since completely recovered from?  I didn’t have it.  The monkey can tell just by looking at me, one year later, and by looking at the notes and labs the god monkey left in his system.

Dear reader, if this happens to you it is important to remind yourself that no monkey is going to take your word or the word of real doctor over another monkey.  Regardless of the evidence.  Monkeys don’t listen, they don’t read, and they certainly don’t have deductive reasoning skills.   So if you get this far into an encounter with a monkey, you really should listen to the little angel sitting on your shoulder that is yelling “don’t walk, honey, run.”  Because monkeys aren’t going to believe anything you say if it contradicts what another monkey says, regardless of the merits of your statements.

And here is where I made a rookie mistake.  I tried to reason with the monkey.  I told him that (1) I went elsewhere when I didn’t get diagnosed by the god monkey; (2) the excellent doctor who I saw next ran a battery of tests and found plenty of evidence I had Cushing’s, despite what was listed in the monkey’s system by the god monkey; (3) that the excellent doctor ordered a better MRI than the god monkey did and in fact saw a tumor;  (4) the neurosurgeon (also an excellent doctor) I saw after getting diagnosed removed two tumors from my pituitary; and (5) after surgery all of my Cushing’s symptoms went away.  And I am NOT going to argue with a monkey about a disease I had last year.  End of discussion.

My bad.  I already knew #1 and #2 and should have known trying to reason with a monkey was futile.  All he did was look at me and laugh.  If a monkey doesn’t believe you had Cushing’s, a disease he never was even asked to evaluate you for a year ago, he certainly isn’t going to believe that the problem you came to see him about today exists either.  And he will make this abundantly clear to you.  If I had walked in with a bloody stump where my left arm used to be, he would obviously deny the arm was missing too because “god” never made a note of that in his system either.

#4 – Monkeys will tell you that you are “chasing a problem that doesn’t exist” but that even if you DID have the disease you are jonesing for, “he wouldn’t treat it anyway because your labs aren’t high enough.”

This really is the hallmark sign of a monkey.  They can’t think for themselves and they therefore assume you can’t either.  They don’t understand that you showed up in their office for perfectly logical reasons – you had symptoms and some lab results that indicated there might be a problem with the organ that they are trained to treat.  All they want to see is a number on a piece of paper, preferably from another monkey.  The number on the piece of paper is called a lab result.  And the lab result should be very very different from the range of numbers that are generally to the right of the main number on the same piece of paper.  This number allows monkeys to wear white coats and make decisions about the medical treatment of patients just like real doctors do.  And this number tells them whether something is wrong with you.   They can’t really read or listen and this little piece of paper allows them to neatly bypass that whole complicated mess.  If you can’t get out of bed most days without crying from pain, if you can’t make it through the day without sleeping, if your hair is falling out in patches the size of a quarter, and if you haven’t had a bowel movement that even remotely resembles normal shit in the past five months, it doesn’t matter! Monkeys don’t need to trouble themselves with such trifling details!  If the lab says the top of the reference range is 10.2 and all that is in “god’s” system is 10.1 (despite the stack of labs you are holding in your hand that didn’t come from god), you are  SOL dear reader.  Not only were you not sick last year, you aren’t sick today!   Congratulations, patient.  Please go home now and go on with your life and stop chasing a diagnosis for a disease you don’t have.

And so, dear reader, once you realize you are in the office of a monkey, what should you do?  The best thing you can do is just gather up your belongings and leave.  You don’t even need to say why.  You don’t need to say thank you and have a good day.  And even if you want to, don’t bother telling him you hope he gets an awful disease with borderline abnormal labs and that it takes him a decade to figure it out.  Just go.

I know all too well this is easier said than done.  It isn’t easy because you are not a monkey.  You are a human and you are sick and it hurts to be dismissed, especially when you are truly suffering and just want to get better.  And it sucks because often the one thing standing between you and getting better is a damn monkey.  So, let me leave you with a few thoughts that helped me when I was trying to get diagnosed with Cushing’s and that I hope will help you too.

Tip #1:  If you have been sick for several months and you have seen several doctors but are not getting anywhere, there is a good chance you have been seeing monkeys.  You are not looking for a monkey.  You are looking for a thinking, listening, caring doctor who is willing to figure out what is wrong with you after all the   monkeys have failed.

Tip #2:  Doctors are not gods.  Even good doctors are human and even though they listen and they think outside reference ranges and really try to figure things out, they will sometimes make mistakes because they are human.   But monkeys don’t think they are human.  They think they are gods and that they don’t need to listen or think outside reference ranges or read.  And because they don’t listen or think or read, they make more mistakes and they often make worse mistakes.

Tip #3:  If at first you see a monkey, get a second opinion.   If you see a monkey on the second try, get a third opinion.  To limit the number of monkeys you see, talk to other patients that are having the same problems as you.  If they managed to see a good doctor, try and see their doctor.

Why is it good to listen to other patients?  Because patients aren’t monkeys.  They have been in your shoes and have already done a lot of the hard work for you.  I learned this when I had Cushing’s.  After seeing a large number of monkeys, it was other patients that finally sent me to a really good doctor.  And he listened to me and did tests and took all the evidence into account when trying to get me better.  And he succeeded.

And so I did the same thing now.  After my encounter with the monkey, I asked other patients with the same problems I am having now who I should go see.  They recommended two doctors.  I will call them Dr. L and Dr. N for short.  Both doctors read my file in it’s entirety.   Both doctors listened to my description of my symptoms and asked questions.  Both doctors agreed my calcium was “borderline” but that my other labs were not normal at all and might be consistent with another tumor.  They also acknowledged that really sick patients sometimes have  “borderline” labs because reference ranges for labs don’t fit every patient.   Instead of dismissing me because I am not an “easy” case, they both independently decided to keep digging.  One doctor is sending me for imaging; the other is sending me for more labs.

I am scared to death that after more tests and more imaging I will still come back empty handed and a little tiny monkey in a white coat will be sitting on my other shoulder saying “I told you nothing is wrong with you.”  But I know something is wrong with me.  And I know I will figure it out someday, with the help of some good doctors, some very smart patients, and hopefully no more encounters with monkeys.

The Groundhog Year From Hell

It seems all too fitting that I am writing this post while us New Englanders are buried under a mountain of snow in the middle of February and that Punxsutawney Phil has predicted we have more of the same to come.  He also seems to be telling me I am in for my own personal Groundhog Year from hell.  Let me explain.

Last year on this exact day, I was in Houston, Texas with my man and my dad and step-mother.  We were all anxiously awaiting my upcoming neurosurgery at MD Anderson.  Just a few days earlier, I had been cleared for surgery and not a moment too soon.   By this time, I was so exhausted that I was sleeping roughly six solid hours during the day.  I had routinely had blood pressure of 180/120.  One of my eyes was drooping and I had daily cluster migraines.  I had gained over 60 pounds in a matter of months.  I was so tired that could barely walk from my couch to my kitchen (and in my tiny South End condo this is a distance of about 20 feet).  I had lost about one-third of my vocabulary and could only really participate in a conversation for about 5 minutes before losing my ability to follow along anymore.  I had stopped working several months ago and spent my days either sleeping or sitting in a daze on the couch, not even lucid enough to follow a crappy TV show.

But I was really happy.  I was a little nervous about surgery, but mainly I was excited to get on to the next phase – recovery and getting back to having a regular life.   It was clear, to me at least, that the surgery was a success the moment I opened my eyes.  My brain fog was gone!  I immediately started sleeping at night, even in the hospital, and I was awake – really and truly awake – during the day.  I remember my step-mom kept telling me to close my eyes and rest in the hospital.  I couldn’t talk much because moving my face made my head hurt really bad due to the proximity of my face to the surgical site.  But I didn’t want to sleep! I didn’t need to sleep.  I was so happy just to sit there and watch and hear everything going on around me.  All day long.  No naps required.

The day after I was discharged from the hospital, we went for a two mile long walk.  Two miles! All the way from the hotel to the hospital and back.   This kind of feat had been impossible for months.  You have no idea how shocking it was to me, my parents and my beloved M to see the transformation.  I don’t want to mislead you, the next several months of recovery were really hard and I will talk more about that in later posts.  And I had heard so many horrible stories of people waking up (or discovering in the weeks following surgery) only to find out they still had Cushing’s after brain surgery.  But the immediate signs of remission were clear and remarkable and I was over the moon with happiness.  I was going to get my life back, I really was getting better.

But in the months following surgery, despite the fact that the damage from Cushing’s was slowly disappearing, new problems started to rear their heads.   The first sign of trouble was really severe back pain and intermittent stabbing pain in my back between my shoulder blade and my spine.  I never had this during Cushing’s and it didn’t “feel” like Cushing’s.  I was still sleeping really well at night and was awake more and more during the day.   I talked to the Wizard about it and he warned me that sometimes Cushing’s can mask other diseases – Cushing’s causes your body to secrete too much cortisol, which is a natural anti-inflammatory.  After surgery, your body has to get used to living on normal amounts of cortisol, so if Cushing’s was “treating” any other illnesses you were definitely going to feel it.  And this seemed to make sense in my case.  The Wizard ran some lab tests and although my pituitary hormones and cortisol levels were textbook perfect, as we expected, some of my other lab tests were abnormal.   My Alkaline Phosphatase had been climbing for months and was about double a normal value.  This was a big red flag.  And my calcium was all over the place.  Never in the “purple horn” zone, but definitely it was at least a yellow flag.  A few other tests indicated that I might have abnormally high bone turnover, which could definitely explain my bone pain.  But why were these labs abnormal and why was I in pain?  What did this all mean?

From here, I just kept getting worse.  It only took a few months of denial this time to accept that I was back at the starting line for Marathon 2, not even six months after getting rid of Cushing’s.

Getting diagnosed with Cushing’s was a marathon, not a sprint

As a former marathoner myself, I see so many parallels between the marathon and getting diagnosed with a rare disease (Cushing’s in particular). Crossing the finish line of the marathon is such a mix of pain, exhaustion and relief. As strange as it sounds, so was getting diagnosed with Cushing’s disease: a big pile of pain, exhaustion and RELIEF. Before getting sick with Cushing’s, I believed that getting a strange and scary disease went something like this: a purple horn starts growing out of your forehead, so you go see your doctor. Your doctor recognizes the purple horn and immediately runs the standard test for purple horns. The test has a reference range of normal values between 0 and 10 and your test comes back at 1000! Whoa! Immediately, you are diagnosed with Purple Horn Disease and you get shuttled off to a specialist, who quickly hands you a comprehensive treatment plan. Quick and painful, much like a sprint.

Now I know better. I was planning for the wrong race and I was woefully unprepared for what was coming. Here is what the race actually looks like.

Mile 1. You start getting some vague and annoying symptoms that you (and your doctors) chalk up to hitting your 40s. You start to gain a little weight in your midsection and start getting acne again for the first time since your teens. You also start to get depressed and have trouble sleeping.

Mile 5. Over time, you stop sleeping altogether many nights. Your doctor puts you on an anti-depressant and tells you to exercise more as it will help you sleep and will get rid of the extra weight which is partly what is making you depressed! But the thing is, you can’t seem to run very well anymore. What used to be a warmup run for you now is impossible. Every run is hard and the harder you try to run, the slower you get. Which is depressing!

Mile 10. You have begun a slow downward spiral of having a harder time exercising, gaining weight, and not sleeping. And despite your best efforts to cut more and more calories, to take all sorts of sleeping aids so you can get even a few hours of solid sleep, and forcing yourself to run even when you are walking more than running…you keep getting bigger and slower and more awake at night (and sleepy during the day). You also start avoiding people. You are gaining weight and ashamed of your appearance, you are too tired to anything but flop on the couch when you get home from work. And you have started getting very angry for no reason. Pretty much anything will throw you into a rage, even in public. And this isn’t like you at all, but avoiding people seems wise.

Mile 15. You have now been struggling for well over a year and you are starting to see as many specialists as you can, because this just can’t be a normal part of turning 40. Gaining 50% of your body weight just can’t be normal. And it just can’t be normal for a marathoner to have escalating hypertension. And it isn’t normal to have to sneak home from work to sleep during the day because you are too tired to stay awake for more than 3 hours at a time. But no one can find anything wrong with you. And most of the specialists you see don’t believe anything is wrong with you, because you don’t have a purple horn. All you have is a set of vague symptoms.

Mile 20. The second wind arrives! Finally a cardiologist that is used to working with runners sees you and says “I think you might have Cushing’s!!” And everything is so clear to you. You read the list of symptoms and you have so many of them – hypertension, rapid weight gain, totally wired at night but not during the day, depressed, a “buffalo hump” (collection of fat at the base of the neck) and so many others. You are so happy because finally you are going to get your magical tests and get sent to a specialist and get sorted out. So your cardiologist runs all the right tests…and they come back mixed. Some are slightly positive, some are negative, and the lab didn’t run some of the others correctly so those are no help at all. But you have your second wind and at least have a direction to pursue now.

Miles 22-24. This is the worst part of the race, physically and mentally. You are now sure this is what you have, Cushing’s, so you make an appointment with an endocrinologist because now that you have a diagnosis that fits and at least some tests indicating it could be Cushing’s, you figure it will just be a matter of a few more tests and you will be set to go. Five endocrinologists later, all you have is a bunch of doctors who still don’t think anything is wrong with you. You have a bunch of MRIs of your pituitary too, but the doctors and radiologists don’t even agree on whether there is actually a tumor in your head or not.

Mile 25. You are starting to give up hope. You are so close to the finish, but so far at the same time and you don’t think you are going to make it. But just in time, you manage to find a group of patients on the internet and they turn out to be your saving grace. They have run this race before. Some of them are running it for the second or third time (you want to be a “one and done” marathoner so this isn’t welcome news). And they tell you this is how the Cushing’s marathon course works for everyone. They tell you that tumors like the ones that cause Cushing’s are not always active and that fluctuating labs (and some positive and negative test results) are common. They look at your MRI and tell you that you DO have a tumor (these educated amazing patients look at more MRIs than lots of doctors). They tell you to fly across the country to see another endocrinologist. They call him the Wizard. And they tell you that if anyone can figure this out, the Wizard can.

Mile 26. The final stretch. You think it is completely crazy to listen to a bunch of sick people on the internet that you have never met and you think it is beyond crazy to fly cross-country to see a doctor with a nickname like the Wizard, but you have exhausted every other option and you are getting sicker by the day. You fly to Los Angeles to meet the Wizard. He spends an hour with you and really listens to you. He doesn’t tell you to eat less or exercise more. He doesn’t tell you that you can’t be that tired or that you couldn’t be restricting your calories and gaining that much weight. He just listens and takes notes. He then runs a battery of tests – you do a cortisol test of one type or another every single day for three weeks when you get home. And just like the patients on the internet told you, some of the tests are negative but many of them are positive too. The Wizard also orders one more MRI and very clearly sees one and maybe two tumors. And you finally get diagnosed with Cushing’s. The race is over, you are exhausted and in pain and your body is a wreck. But mainly, you are relieved that after all this you aren’t completely crazy, that this isn’t just your imagination. Something with a name – Cushing’s – was actually destroying your body.

Post-race activities. The Wizard refers you to a neurosurgeon. You fly to Texas and you have brain surgery to remove two tumors, you recover enough to get on a plane and you fly home. But the story doesn’t quite end there. You have blocked out everything the Wizard and the wonderful patients on the internet told you about the fact that recovery will take between 18 and 24 months, if all goes according to plan.   You had to block it out – no one is foolish enough to think about that when they are trying to survive a marathon.  If you did, you would just lay down in a ditch beside the course and you would never get back up again.

Now that I am on the other side, I can tell you that recovery was the least of my problems.  Unbeknownst to me, the second marathon was already underway.