It’s not over until the fat lady sings…and she ain’t singing yet

After my disappointing appointment yesterday, I had the following exchange with my PCP via email, below.  It just made me feel hopeless.   I know she thinks I need exercise and anti-depressants and Prilosec – she has suggested all three to me before.  NO AMOUNT OF PROZAC AND PRILOSEC CAN FIX A TUMOR.  It boggles my mind that she honestly thinks this crap is going to solve my problems.  But it is good to know where I stand with her so that I can plan according.

Thankfully, I generally respond well to negative reinforcement 🙂  I was down last night, but I woke up mad as hell and more determined than ever to figure this shit out.  The fact that my PCP doesn’t think there is any “major diagnosis” coming my way was just the smack I needed to get my motivation back.   Just because she (and the others I have seen so far) can’t figure it out does not mean there is no diagnosis.    It just means there is no diagnosis YET.

The moral of the story, folks, is that if your doctors don’t believe in you and aren’t willing or able to put in the work to figure out your problem, MOVE ON.  You are the one that gets to decide when to stop looking for answers, not your doctor.   You are the fat lady – don’t start singing until you are better.

***********

Doctor:

I am sorry to hear that you are not feeling well.

I have spent quite a bit of time reviewing all of the notes & studies of your various specialists.  I have spoken with many of your specialists and reviewed in detail the notes from The Wizard (though I was unable to reach him directly by phone or email; his staff seems to screen his calls).

All of the specialists agree that it is unlikely that any additional testing will shed any light on your symptoms.  Even The Wizard indicated in his notes that he thinks it is unlikely that a hormone problem is contributing to your current symptoms.

The specialists I have spoken with are in agreement that the best way to proceed at this point is to focus on improving your overall well-being.  The specialists consider it unlikely that any additional tests will uncover a major diagnosis such as a cancer or hormonal imbalance.

I have a number of thoughts about how to improve your overall level of wellbeing-more energy, less short of breath, less coughing.  Please make an appointment to come in to see me.  It would be helpful if your husband, or another trusted friend or family member, could come with you to the visit.

The one specialist I have not been able to contact at all, or receive any notes from, is your psychiatrist.  This is because of privacy protection that keep his information separate from the rest of your chart.  If at all possible, it would be wonderful if you could arrange for Dr. X to fax me a treatment summary.

*****

My reply:

Please tell me you are kidding.  The Wizard’s last dictation clearly says he is concerned about a carcinoid and wanted me to get a biopsy.  I DO have abnormal bone turnover markers and hormonal abnormalities.  And I was in the ER in a hypertensive crisis in March.  My blood pressure was 222/119 and I was flushing profusely.  This is all in the record too.  There IS something wrong.

I understand your inclination to just give up on this and suggest I get therapy and go for a walk or whatever solution you think will magically fix this.  But let me tell you this is EXACTLY what I went through last year.  Countless doctors ran one or two tests and concluded nothing was wrong.  Several radiologists looked at my pituitary MRI and told me there were no tumors.  It wasn’t until I found someone willing to do enough of the right tests to get to the bottom of it that I finally got diagnosed.  When a better MRI was taken and an experienced neurosurgeon looked at it he saw TWO tumors.  And when they were removed, I got better.  My prior PCP and a whole pile of specialists told me I needed anti-depressants and I should just go get fresh air.  And they were wrong.

I am happy to have my psychiatrist reach out to you.  He saw me during the entire mess of diagnosis last year and he knows my case well.  And I am happy to come in and see you and discuss measures you have in mind.  But if you don’t actually believe there is something seriously wrong?  I don’t think this is going to be helpful.

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Closing the door on Plan C

I had a follow-up appointment with Plan C today – a local oncologist specializing in NETs (which includes carcinoids).  Since my labs all came back negative and the Octreoscan was read as negative, she is sending me back to my PCP and won’t be scheduling a follow-up with me.  She knows something is wrong – I was flushing profusely when I was in her office today – but she has looked into this as far as she is able to here and is going to leave it at that.

I do still have the somatostatin test pending and she did order two more tests – Chromogranin A, which is another marker for carcinoids, and calcitonin which can be elevated with medullary thryoid cancer (another disease that can also cause flushing).  She also recommends I see an allergist to perhaps further rule out a mast cell disorder, although she did run some tests for this and they were negative as well.

I am obviously very disappointed, but as I told the doctor, it is not her fault that the tests are negative.  I was a little irked that she and her radiologist are re-interpreting my Octreoscan report (which said “suspicious for neuroendocrine tumor in the anterior mediastinum”) to “faint uptake.”  She is claiming it was so hard to find her radiologist initially read it as normal and only saw the abnormal uptake after being asked to go back and look again in a specific location based on the NIH findings.  Does that mean the uptake was faint or that the radiologist didn’t look?  I can only speculate on the answer to that question.

As I have a tendency to do in doctor appointments these days, I started crying at some point.  And the doctor said what all the others say – perhaps I should see someone to help me cope better with what is going on and perhaps I should consider treatment for depression.  I explained to her that, under the circumstances, my mood is actually pretty good at home.  And I can’t help crying because living like this for months/years at a time and continuing to run into dead ends is incredibly frustrating.  I AM NOT DEPRESSED.  THIS IS DEPRESSING.  There is a big difference.

Back to the drawing board.  There will be a Plan D.  I am not quite ready to figure that out or face it today.  But I have no choice but to start putting it together tomorrow.

Karma is not a four letter word

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I am not a big believer in, well, anything but science.  But I do believe karma kicked me in the ass the last couple of years.  And the reason I call it karma is because I know I had it coming.

You see, I used to be pretty judgmental about overweight people.  Until the last few years, I was one of those skinny, smug, healthy people that would cringe when I discovered I would be sitting next to an overweight person on a plane.  I would silently judge when I saw an overweight person buying junk food at the grocery store.  I would exchange knowing glances with my skinny, smug, healthy friends if I would see an overweight person struggle up the escalator while we took the stairs.

That was me.  I am not proud of it, but I know it was me.   Until karma came to pay me a visit in the form of Cushing’s disease.  I turned into one of those people I used to love to judge – fat, slow, unhealthy.  On the few occasions I left the house – I started getting those looks I used to give other people.  I started to feel defensive when I shopped for groceries and worried people were checking out the contents of my cart to see what exactly I was eating that was making me so big.   The worst was going to my cardiologist’s office.  He was a cardiologist that specialized in athletes.  I could feel my face get hot and see the looks of disdain once I got out of the waiting room, as people clearly wondered “Why is he seeing HER?”

It stung.  And it made me mad.  These people didn’t know shit about me.  They didn’t know how healthy I was before, how sick I was now and that this was not my fault!  I have enough problems already without your disapproving looks or, worse yet, suggestions on how I should get more exercise and change my diet (this even from doctors who knew I was sick and frankly should have known better).  I ran 8 marathons between 2007 and 2011, before getting sick, and weighed 125 pounds for years.  Don’t you think I KNOW how to keep my weight down?  If it were really that simple, don’t you think I would be skinny right now?  And furthermore, even if I DID do this to myself?  Who the hell were they to judge me?

More than anything, this whole experience made me really ashamed.  I never fully realized how hurtful these judgements were until I was the fat person on the receiving end of it.  I certainly never realized how ugly the people delivering the judgements looked either.  Now, I know better.  I wish I could go back and make amends somehow, but chasing down fat people in Whole Foods and airports and apologizing profusely was unlikely to receive a warm reception.

And so, I will offer my apology here.  I was not respectful to overweight people.  I made jokes, I rolled eyes, I checked out shopping baskets in grocery stores, I judged.  Whether someone is overweight because they got Cushing’s or because they made lifestyle choices that caused their weight gain?  It doesn’t matter.  It was wrong.  IT IS WRONG.  I am really, truly sorry and ashamed that I judged.  I wish I could take it back, but I can’t.  It is unfortunate I had to get Cushing’s to figure this out – but I am glad I did.

Emily Post for Cushing’s, Part II

This post is a continuation from Part I and covers what to say (or not say) when trying to be supportive to someone in your life that is struggling with Cushing’s or another serious illness.  Part II, below,  focuses on the topics of giving advice and commiserating with someone suffering with Cushing’s.

4.   “Oh, I know all about how bad hormones are – I had wicked PMS last week!”  or “Oh, I know all about exhaustion, my [kid, job, etc.] kept me up all night too!”   You may understand how PMS or sleepless nights for work or a child may feel.  That does not mean you understand how it feels to have a brain tumor pump high levels of hormones into your bloodstream and to have no idea if and when it is ever going to stop.  Attempts to commiserate by comparing the two can give a person with Cushing’s the impression that you think they are equivalent.  And they just aren’t.  That is not to say your problems are insignificant – it just isn’t a good idea to compare your suffering to someone else’s because the end result is that you are making a judgement call on who is suffering more or less.   It is not up to you to decide how legitimate someone else’s suffering is and you can’t make that call anyway because you don’t know how they are feeling.  More importantly, it is irrelevant.  The sick person sitting in front of you is suffering and needs to talk about it.  The best thing you can do is simply listen and hear them out.  Instead of “I know all about being exhausted” you might want to try “So you aren’t able to sleep at all during the night?  It is no wonder you are so exhausted…”

5.  “I wish I could stay home and sleep all afternoon/I wish I could take a few months off work/I don’t have the option of staying in bed – I have children” or anything in that genre.   This one kind of follows the same theme as the others.  I didn’t stop working because I had the luxury to do so.  I got a call from my boss one evening and was told I was being taken off a case because I was too sick to go to the office and I was trying to meet a deadline by working in three hour shifts from my bed around the clock.  I didn’t choose to sleep all day or choose to not get out of bed – if you get sick enough, your illness takes those choices away from you.   In my former healthy life, I used to get lots of things done by sheer brute force – including 100 hour work weeks at a couple points and back-to-back marathons with an injury.  So it wasn’t like I didn’t know how to push myself to get things done. And to be honest, I didn’t really believe that someone literally couldn’t get out of bed for days at a time when I was healthy.  But I was wrong and so are you.  With Cushing’s, the brute force method just didn’t work.  Trust me, I tried.  And although it may be hard for you to imagine fatigue or any other symptom being so debilitating that it would keep you from getting out of bed, that doesn’t mean it isn’t real for the sick person you are talking to.  So why not say that instead? “I can’t imagine how awful it feels to be unable to get out of bed.”

6.  “Did you get this because your job is so stressful/you were on birth control pills for so many years/you don’t know how to relax?”   or anything remotely related.  It is bad enough you are sick. The last thing you need is to be forced to engage in speculation on whether it is your fault.  Even if working too much or studiously avoiding pregnancy for decades did cause tumors a sick person doesn’t want to hear about it and that knowledge certainly isn’t going to help her now.  If you are dying of curiosity to know if job stress can cause brain tumors, go do some googling to find out for yourself.  Just don’t take the person with the tumor along for that ride.

7.    “Maybe you would feel better if stopped focusing on your illness” or any statement remotely related should be avoided at all costs.  I remember a friend asking me one time what was new at a point in time I had been having excruciating back pain that was making it very difficult to sleep or move around.   So when I told her I was really struggling with pain and she replied “Besides the pain, what else is new?” it was hard not to interpret the statement as “I am sick to death of hearing about your stupid back.”  I know it wasn’t the first time I told her about the back pain and no doubt it is annoying to keep hearing the same complaint over and over again.  But at point, the pain was bad enough to be all-encompassing.  There was nothing else new.  This back pain was sucking the life out of me.  I had been trying everything under the sun to get rid of it, including getting nerve endings in my spine burned off.  There was no hope of something new to talk about until this was somewhat under control.  My life was not “I have crippling back pain and oh, I am taking a class on French cooking!”  There was nothing I would have liked more than to think about something else or focus on something else – it just simply was not an option.  Instead of deciding on your own the person is making their problem worse by thinking about it too much, try to take a sick person at face value when they tell you they are experiencing health problems that are taking over their lives at the moment.

Emily Post for Cushing’s, Part I

I saw this article on my FB feed the other day entitled “12 Things You Should Never Say To Someone With A Chronic Health Condition” and it really resonated with me:

http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

So many of the statements on the list do come up on a fairly regular basis and I could see how the person making the statement was trying to be supportive while the person on the receiving end just ended up feeling invalidated.  After reading this, I thought it might serve as a great topic for an “awareness” blog post but I also felt a little hesitant to actually write the post.   On one hand, I think the information could be helpful; on the other, I sincerely don’t want this to feel like a public shaming 🙂   This post is the product of personal experience and many conversations I have had with other people struggling with Cushing’s or other illnesses.  It is really meant to be helpful and to simply give you a little insight into how a statement that is coming from a supportive place may actually not be received that way.  So, with that caveat in mind, here we go!

Part I focuses on statements that are intended to show support or to be optimistic but can miss the mark because they fail to acknowledge reality.

1.  Any variant of “You look great!” –  The intent is to make the person feel good about their appearance, this much is clear.   But it really is like answering the question: “Do these pants make my ass look big?”  There is no way you are going to get out of it alive, so the best thing to do is avoid going down that road at all.   The problem with commenting on appearance – just like with the question about the pants – is that the Cushing’s patient KNOWS they don’t look great – they have gained a lot of weight, lost a lot of hair (and in all the wrong places) and they are feeling bad about it.  Telling them they look great when they don’t look or feel like themselves at all invalidates their own feelings about how this drastic change in appearance is affecting them.  That doesn’t mean you should say “Your ass really does look big in those pants!” either.   Just don’t go there.  A better thing to say is something like “It is really great to see you.”  Very complimentary, focuses on your positive feelings for the person, and avoids the appearance land mine altogether.

2.  “You are so brave/strong.”  Some people don’t mind this one, but maybe it is because they feel brave/strong. Personally, I don’t feel brave or strong at all and I don’t like being told I am brave either.  Most days, I feel some combination of scared, helpless, weak and frustrated.  There is nothing “brave” about getting sick, not in my experience anyway.  I sometimes wonder if “You are so brave” is said more for the benefit of the speaker and less for the recipient.  Perhaps it is easier to believe an ill person is brave than to believe they are scared and struggling.  But that might not be the sick person’s reality.  So telling someone they are brave when they don’t feel that way at all just might make them feel no one wants to really deal with what they really are feeling.

3.  “You are going to be fine!”  One of the toughest aspects of dealing with Cushing’s and, I imagine, other similar diseases is dealing with uncertainty.  Do I have actually have Cushing’s?  What if we can’t find the tumor? What if the labs are negative?  What if I do have Cushing’s?  What if the surgery doesn’t work?  I still feel really lousy – am I actually in remission?  A huge proportion of Cushing’s patients have failed/repeated surgeries and new problems cropping up in the months – and years – after surgery, so “being fine” is nowhere close to guaranteed.  It just doesn’t work like that.  That’s not being pessimistic or dramatic – that is REALITY.  You don’t know if your friend with Cushing’s is going to be fine and your friend with Cushing’s definitely doesn’t know that and the uncertainty of if and when they are going to be fine is something they are probably really struggling with.  So don’t deny their reality.  Saying “You are going to be fine” isn’t reassuring – it is isolating.  A better idea is to simply ask “How are you feeling today?” and then really listen to what they have to tell you.  Or if the future comes up, follow their lead.  If they are feeling great and are confident they are in remission, acknowledge it!  If they are feeling uncertain and pessimistic, acknowledge that too!  Most Cushing’s patients I talk to really just want to be heard – not to be told how to feel or what to believe about their own particular circumstances.

Plan C: A local oncologist specializing in GI NETs

Last week, I had an appointment with an oncologist specializing in NETs.  I was my usual nightmare patient self, walking into the appointment with a stack of symptoms and labs as long as my arm.  I tried my best to keep the list short and to the point, but the more questions she asked, the more messy it got.

I got a good first impression of this doctor.  She spent a lot of time with me and M.  She was happy to look at the pictures I brought with me and we discussed my labs at length.   I even ran my crazy somatostatinoma theory past her and showed her my suppressed TSH, IGF-1, gastrin and glucagon labs that were indirect evidence supporting this theory.  She didn’t laugh at me, which other doctors undoubtably would have.  Instead, she peppered me with questions about pituitary function post pituitary surgery (as this is not her area) as if I was a doctor and not a patient.  And she ordered the somatostatin test.  The tumor is very rare and not surprisingly so is the test.  The cancer center where I would have the test didn’t even carry the tubes needed to collect the blood for this sample, so it was going to be another week or so before the right equipment could be ordered and  I could even get the blood drawn.  The sample has to be sent elsewhere to be processed as well, so I might be waiting awhile to hear back about the results.  And I am already preparing myself for the high likelihood my somatostatin is going to come back normal, as I do understand the tumor is rare and that even if this was my problem the labs don’t always support the diagnosis on the first round (or the second or third rounds for that matter).

She agreed that my symptoms could be consistent with a carcinoid and also agreed that a thymic carcinoid was unlikely to show up in my labs.  She understood it was possible, but problematic, for the Octreoscan and not the CT to find a tumor.   She was willing to send me for a consult to one of the thoracic surgeons her group works with, but wanted to try and make sure the consult was a productive one and so wanted to help me build a case first.  This seemed like a very reasonable approach to me.  Building a case meant three things at this point:  (1) more labs to try and rule out other potential causes for my symptoms (namely mast cell disorders and pheochromocytomas) and rule out other locations for a carcinoid that would show up on labs, (2) conducting another Octreoscan to see if anything has changed in the last two months and (3) sitting down with her radiologist and all of my old scans and the new scan to see if a surgical target could be identified.

She also indicated an interest in getting me a Gallium-68 scan depending on how the first round of tests came back.  Gallium-68 scans are even more sensitive than Octreoscans and are able to pick up lots of neuroendocrine tumors that Octreoscans and more inferior scanning methods (CTs, MRIs) routinely miss.  There are only a few places in the US that have access to Gallium-68 scans and they are only being used in clinical trials at present, so getting a scan is not all that easy.  I had been looking into these trials and contacting various researchers about getting one done myself in the last couple of months.  So I was really encouraged to hear her bring this up with me before I broached the topic with her.

So far, all of the labs have come back normal (with the exception of the labs that have been abnormal for the past year).   The Octreoscan results are also back and the radiologist report says there were no abnormal areas found on the scan! At all!  I already had a positive scan in January and I feel worse, so how is this possible??  I have a CD of the Octreoscan images and they didn’t look normal to me but I am an economist, not a radiologist.  That said, I have seen enough normal radiologist reports on my pituitary MRIs (when I had two tumors that even an economist could see without being told where to look) that I don’t really believe the radiology report this time either.  But it is still discouraging to be facing higher odds of another dead end with Plan C.

I see the oncologist again on Monday and can honestly say I have no idea how that appointment is going to go.  All I can do in the meantime is try and stay as comfortable as possible at home.  I am taking hydrocortisone to keep the carcinoid symptoms at bay – I am requiring increasing amounts to keep the flushing and coughing under control and that does concern me, as I have been carefully avoiding all the foods that I thought were causing my symptoms.  So whatever is going on, it is continuing to get worse.  And I really hate taking hydrocortisone as taking this stuff is sort of like giving yourself Cushing’s (it is a synthetic version of cortisol) and I am SO OVER Cushing’s.  But right now, it is a necessary and hopefully temporary evil.

So back to waiting and trying not to get my hopes up after another round of uninformative tests.

A Month of Blog Posts for the Cushing’s Awareness Challenge! Day One

The Cushing’s community, led by our “fairy godmother” MaryO, has been hosting a Cushing’s Blogging Challenge for the last several years.   You can find more information here:

http://cushie-blogger.blogspot.com/2015/03/cushings-awareness-challenge-2015.html

April 8 is the birthday of Dr. Harvey Cushing’s, the “father of neurosurgery” and the first physician to document Cushing’s.  To celebrate his birthday, Cushing’s patients are banding together to write blog posts on topics related to Cushing’s every day in the month of April.  I am going to try and stick to this theme, but weave in a few posts here and there about what is going on post-Cushing’s as well.  So stay tuned!

For my first post, I would like to take a little time to talk about MaryO and how much I, and the rest of the Cushing’s community, owe this wonderful woman.  MaryO first started seeing the first signs and symptoms of Cushing’s in the early 1980s.  After countless rounds of doctors appointments and dead ends, she was finally diagnosed and had surgery at the National Institutes of Health by the late 1980s.  She subsequently went through the difficult recovery from surgery and from the damage Cushing’s did to her body over the years she was sick.   This part of the Cushing’s journey MaryO shares with many of us.

What MaryO does not share with many of us is the fact that she didn’t have the same access to information and support that so many of us depend on to get through this frustrating and complicated diagnosis and recovery process.  There were no online support groups.  No PubMed articles available at the click of a button.   MaryO spent hours researching Cushing’s in a library, figuring this mess out on her own.  And after she figured it out and began the slow process of recovering she did something even more remarkable.   She stuck around to take care of hundreds of us that were to follow her into the Cushing’s abyss.

MaryO launched a website in 2000, and subsequently message boards, to share information on Cushing’s with other patients and to give Cushing’s patients a place to come together and learn from and support each other.   And because of MaryO, thousands of patients have come across her site, learned from the information MaryO and others posted and met valuable allies to help guide them through the struggles that were to come.  And many of MaryO’s followers, out of gratitude for this community, stuck around too and helped the next generation of “Cushie’s” get their lives back too.

When I fell into the Cushing’s abyss in 2012, I struggled for a year in the dark by myself before finding MaryO’s site.  And that site changed everything for me.  I learned everything from these anonymous names and faces on the internet – when I should test, which doctors I should see, what questions I should ask, what the test results meant and didn’t mean.  Just as important, I got the validation that I desperately needed – my symptoms were REAL and they really were as debilitating as they felt.  I wasn’t in control of the horrifying transformation my body was making or the equally horrendous changes in my personality.  The doctors who tried to tell me there was nothing wrong with me  needed to be fired and replaced with better doctors – and they knew which doctors I should see (and they were right).   Out of the abyss came dozens of helping hands who knew exactly what to do and what to say to help me.  And they just kept helping.  They didn’t know me.  They didn’t owe me anything and there wasn’t a thing I could do for them – I was scared and barely keeping my head above water.  But they stuck with me, answering questions, encouraging me, commiserating with me, cheering for me when I finally started getting positive test results and got cleared for surgery.

I can’t think about those days and MaryO and this community without ending up in tears  – not because of sadness but because of the overwhelming gratitude I feel.  And now that I am on the other side of Cushing’s, it is so clear to me why so many patients stick around to help the next generation of undiagnosed patients that are stumbling around in the dark – gratitude.  I owe MaryO and this community a debt I will never be able to repay.  They saved my life.  My dearest, closest friends today are friends I met in this community.   We have gone through something together that has fundamentally altered us in ways that I could not have anticipated and I wouldn’t want to change.

So, as a very small drop in the bucket I owe these amazing people – and especially the lovely MaryO – I am honored to participate in this challenge.