My Stupid Bones

I am a bit of an addict when it comes to radiology and as with most addictions, mine is probably not a healthy one.  Let me start by saying I have zero training as a radiologist.  However, most of the time I am actually able to identify the right body part (full disclosure:  I have screwed this up before.  It is a mess in there!).  I have also been able to locate all of my tumors without someone showing me where they are.  Sometimes I locate problems that no one else has pointed out yet (including the radiologist that gave the official read on the scan in question).  And I think I found a problem on an MRI of my spine.

Over the course of the last 13 months, I have had really horrible nocturnal back pain.  The pain is very localized, way down in my sacrum/tailbone area.  I am almost 100% pain-free during the day, but nights are bad.  I can barely roll over in bed, I often need to get on my hands and knees and sort of back out of bed if I do have to get up in the middle of the night.   Once I am in position I can rest ok, but if I move, the pain is really bad.  Once I get out of bed in the morning and move around a little bit, it seems to go away for most of the day.  I do notice that if I have to lay flat on a hard surface during the day, the pain will come back too (I know this because I spend a fair amount of time laying in MRI/CT/PET scan machines).   I have probably had 20 pain-free nights since it first started.  I can’t talk about it without getting all teary because I am really sick of it.

I also have high bone turnover markers (which I have mentioned before), which we measure regularly by some combination of Alkaline Phosphatase, Bone-specific Alkaline Phosphatase, and N-telopeptides.  We have been looking into several explanations for why this is the case over past few months.  The Wizard recently ordered a bone scan to see if anything turned up, but it came back as normal.  Which, as is all too common for me these days, is reassuring and annoying at the same time.  I don’t want to be loaded with “hot spots” on a bone scan, but it would be nice for a scan to point to an actual explanation for the labs and my pain too!  We do know that the pain can’t be something like a disc, because it is too far down in my spine for that.  So, what the heck is going on down there?

Since I now have an extensive collection of images of my entire body, I decided to flip through my library and take a look myself to see if I could spot anything.  I pulled up an MRI of my sacrum from June 2014 and started digging around.  And I found something that looked weird to me.   On the image, it looks like two black round spots in my sacrum, right about where my back was hurting:

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I have become pretty handy with the medical imaging software and even added the little green arrows so you can quickly spot the stuff I am concerned about.  I don’t think those things are supposed to be there.  I am not 100% sure, as I am not a doctor, but this doesn’t look normal to me.

So today, I went in for my first real appointment with my new PCP.  I fired my last PCP recently, after we had this exchange, and I was worried that bringing this up at my first appointment with my new PCP might really give him the impression I was a lunatic.  So I decided to ease into the topic and just see how it went before springing the pictures on him.   Let me just say that my initial impression of this doctor is very good.  He seems very engaged and eager to figure out and explain things.  I chose him specifically because he was highly rated, a very experienced internal medicine doctor (not “just” a PCP), and because he chose to enter a practice where he had fewer patients and could spend more time with each of them.  For a complicated patient like me, all of these attributes seemed important.   My initial impression from our “meet and greet” was that he was also the kind of physician that did not mind patients that were pro-active and had a lot of questions and wanted to understand the details of medical problems and the treatments.  Also important to me.

We talked about the fact that I was having surgery next week.  He knows my surgeons and is going to touch base with them and stop by and see me post-op in the hospital too.  He certainly doesn’t have to do that but I REALLY appreciate that he is going to do that.  He had lots of suggestions for things I should be asking anesthesia tomorrow during my final pre-op appointment and I really appreciated that as well.  So then we got into my real agenda for the day – this bone pain.  I showed him my bone labs from the Wizard and told him I had a normal bone scan.  I explained the pain to him and the fact that it tended to only show up at night. I brought in the CD of my spine MRI as well and asked if he wanted to take a look.  Unfortunately, he couldn’t load it on his computer right there in the office.

So….I paused and told him that I had looked at it myself and I thought I saw something.  I know, doctor, I am not a radiologist, but I took a screen shot of my MRI and I have it right here on my iPhone.  Want to take a look?  I cringed inside as I asked him (OMG he is going to think I am a lunatic, OMG I am a lunatic).  But to my surprise, he said “Sure, let me have a look!” After a scramble to dig it out, I showed him the above image and…he agreed with me! That’s not normal! Then he went a step further.  He pulled out an anatomy book and gave me an education on my sacrum! I could not have been happier.

First he showed me a picture of what the sacrum looks like from the back:

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So, you can see the sacrum does have two rows of holes in it.  Those holes, the sacral foramina, are where the nerves run through the sacrum.  I had actually seen these holes before when I was educating myself on the sacrum when trying to figure out if that is what I was seeing, just from a weird angle.  So, I was glad to have him walk through this with me.

Then he pulled up a picture of my sacrum from the side.  I will put the picture of my MRI below for comparison purposes:

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The main point, if you compare these images, is that the black circles in my MRI are not in the same location as the foramina.  The sacral canal, where the foramina are located, is above and to the right of my black circles.   Comparing the same two MRI views that match the anatomy pictures, you can the black circles are in a different location than the foramina:

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The green box shows the black circles from the back view (the left image) and the side view (the right image).  The foramina can be seen in the left hand side view.  It is the larger dark circle to the right of the green box, as indicated by the green arrow.  Those black circles in the green box aren’t supposed to be there.

The next question of course is what the hell are those things then?  The short answer is that we don’t know yet.  My current theory is that my high bone turnover markers, my pain and this MRI all mean bone tumors.   I would be lying if I said bone metastasis hadn’t crossed my mind – nocturnal bone pain like mine and the bone turnover markers would be consistent with that.  And NETs like the one we are planning to evict next week often spread to lungs, liver and bone (and I have “stuff” in all those locations).  I am not saying that to be melodramatic or cause anyone to lose sleep, me included.  But the whole point of this blog was just for me to lay out what is going on and what I am thinking.  And this is what I am thinking.  It could be nothing (that’s not likely though, let’s be honest).  It could be something.  I really don’t know.  All I know is that this shit needs to get sorted out one way or the other.

And my new favorite PCP agrees – this needs further investigation.  So, the plan is to see where we are at when the dust settles after surgery next week.  And after the dust settles, he is ordering a new MRI of the spine (as this one is already a year old) and he is sending me to a highly regarded bone doctor.  He is starting to get that referral in place now, in case there is a long wait.    As usual, I am half worried and half relieved that someone is listening to me and taking this stuff seriously.

Let me tell you the other thing that made me want to run around my new PCP’s desk and hug him.  When I described my bone pain to him, he questioned me about it then concluded:  “That is so strange that your bones only hurt at night.  It makes no sense to me.  But you aren’t crazy, and if you say it only hurts at night, it only hurts at night.  I just can’t give you an explanation for WHY that is the case.”  AHHHH THANK YOU!! Thank you for just listening to what I am experiencing and believing me. Thank you for not telling me that my experiences can’t be right or that I must be experiencing something else.  It sounds so obvious that this should be the way things actually work in doctor-patient relationships.  But so often it doesn’t.

The big question you might have on your mind right now is the following: you had this MRI a year ago because of bone pain.  What did the radiology report say?  Didn’t it mention anything?  Well, here is what happened last year.  PCP #1 (I am now on PCP #3) ordered the MRI when I told her about my bone pain in May 2014.  Here is what she emailed to me.  This is a verbatim cut and paste from the summary of the radiology report.

     No evidence of sacral fracture.
     L5-S1 degenerative disc disease as above.

OK, that’s good news.  My sacrum isn’t broken.  I knew I had disc problems too, so that wasn’t a surprise.  But since the MRI didn’t appear to provide any information that would be useful in helping us sort out my bone pain, I decided I would just go and look at the report myself.  And here is what the rest of the report actually said.

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OK, now that is just weird.  The report is claiming I have “numerous surgical clips present” but to my knowledge, I have never had back surgery.  The report seems to be saying further that there is no evidence to tell them how the clips got in there.   Is it just me or does this not make sense?  It seems kind of clear to me at this point that my PCP either never read the full report OR she didn’t find it puzzling that I was full of surgical clips and complaining about back pain and never mentioned a prior back surgery to her.  So I emailed her to say “what’s up with this report and can you please have the radiologist look at this again because this doesn’t make any sense.”  So she did.  The radiologist in turn corrected my report so that it now says:

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OK.  So my back is NOT full of surgical clips.  This is good news to me, as I could take “alien abduction and resulting back surgery” off the differential diagnosis list.   Now I’m told it is “probably mineralization.”  And I don’t really know what that means or if it is harmless or significant and no one bothers to explain it to me.  I have never managed to actually locate anything that looks like a surgical clip in my MRI, for the record, so I am still not even sure where this mineralization is.  All I have been able to locate is those black circles.  But it is really disturbing to me that the initial report was so bizarre, that this MRI was read TWICE because the patient pointed out the report didn’t make any sense, and despite all of this no one managed to see or comment on what appears to be a problem so obvious an economist can spot it on the MRI.

The moral of the story dear reader:  AUDIT EVERYTHING.  And don’t stop digging until you know what is wrong with you.  I am mad at myself for not pushing someone harder to look at the MRI for a THIRD time LAST YEAR.  I am mad at myself for not sitting down with my own CD of the MRI and making sure it was normal.  In my defense, I was sick and this was one of many problems I was trying to figure out.  And it was also clear my PCP was getting fed up with me for pestering her with this when it was clear she believed there was nothing wrong beyond old age and back pain that goes with that territory.  AND IT WAS THE RADIOLOGIST’S JOB TO READ THE SCAN PROPERLY, NOT MINE.  But what is done is done.  All I can do now is keep pestering anyone who will listen – and fire everyone who won’t.

Let the Countdown Begin

I just got cleared for surgery!   Next Wednesday, the 17th of June, my thymus is coming out.  The last six months have been really brutal and I fought every day to get this figured out and for someone to take me seriously.  But I made it.

I just want to say a thank you to those of you that just kept showing up when this got hard.  Especially M.  Every single day, you just kept showing up.  You believed in me and supported me and you didn’t give up on me when so many others did.  You always did and said the right thing.   And thank you to The Coven and the Wizard and a few others too that didn’t tell me to stop being a whiner, didn’t hint that maybe nothing was wrong with me.  You patiently went through test results, millions of pictures from my scans that I kept sending you, and listened to my litany of complaints and frustrations (including, literally, months of talking about my shit).  You just kept showing up.  In the end, that’s all people really need – just someone who keeps showing up when the going gets tough.  I won’t ever forget it.

I don’t know what will come next – if the surgery will work, if it does work how many problems it will fix, what the next phase of treatment will be (if there is one).  But right now I am just very damn happy I made it this far.

A little slice of normal

Yesterday, I got to spend some time with a good friend of mine.  I met this friend many years ago, through my now sister-in-law (another marathoner) on a 17 mile training run for the Boston Marathon.   The training run happened to be on Valentine’s Day, and although the romance I was involved in at that time didn’t stand a chance, it was clear from the get-go this girl was a keeper.

I had a tear-filled dinner with my friend earlier in the week.  It feels like there have been a lot of those recently.  I have been really struggling lately – this whole thing is just feeling very frightening and overwhelming.  My friend has been, well, a really good friend.  At some point during dinner we got on the topic of gardening.  Since getting sick, gardening has kind of taken the place of running for me – it gets me outside and doing something active.  She wanted to do a little gardening herself and so we agreed that if I was feeling well on the weekend, I would join her for a trip to my favorite garden center and we would get her everything she needed to set up her patio for the summer.

I never know how I am actually going to feel from one day to the next, but on Saturday I felt really good, so off we went to the garden center.  We had so much fun – we picked out several varieties of heirloom tomatoes,  veggies to replace a patch of lettuce my dogs flattened, pretty pots for her patio and a bunch of other supplies we both needed.  It was a beautiful day and we had just had such a nice time together, talking about absolutely everything except me being sick.  I looked over at her as she was driving me home at the end of our outing.  The sun was shining and she was smiling and chatting away.  Her hair was up in a ponytail and she was wearing a pink yoga top and she just looked so happy and beautiful.   And for this little slice of time….everything was normal, I was back to my old self and it was just a regular Saturday afternoon out with my running buddy.

An Atheist Prayerbook

I am an atheist.   A no-doubt-in-my-mind atheist.  I don’t believe in God.  I don’t believe in an afterlife.  I don’t believe everything happens for a reason.  I don’t talk about it much, because I know most people don’t like to have someone else’s religious beliefs pushed in their faces and so I try not to push mine on others as well.  But that is what I believe.

I have heard statements such as “without my faith I would never be able to survive this” or some version of (the more offensive) “I don’t know how people without faith survive/cope” on many occasions.  And although I can’t speak for those of “faith” what I can tell you that you don’t need to believe in God or believe that everything happens for a reason to get through difficult situations.  We get our strength and comfort in other ways.  As an atheist, I have a very strong will to live, despite the fact that heaven is not waiting for me at the end of all this (and who is to say I would have made it there anyway!).   I believe I have one finite life and that makes me want to fight as hard as hell to hold onto it and make it count as much as I can.

I may not get comfort from the fact that what I am going through right now is happening for a reason, that there is some grand higher purpose for my suffering.  But I am also not tormented with questions of “why is this happening to me?” either.  I can still choose to try and learn or grow or develop empathy from situations I have ended up in.  I can try and work my hardest (by trying my best to take care of my health or working hard and saving money) to protect myself from the bad random crap that might come my way.   But I can’t prevent all bad things from happening, just like I can’t make all good things happen either.  There are some things in life that are going to happen to me no matter how good or bad a person I am.  And I don’t need to struggle to figure out why these things happen because I have come to terms with the fact that sometimes shit just happens.  This belief brings me a lot of comfort at times like this.  Just look around, open a newspaper.  Shit is happening to people all of the time.  Some of it is spectacularly good, some of it is spectacularly bad.  This is life.  It just is.   I am not being punished.  I am not being rewarded.  I find this knowledge comforting.

I don’t have a special prayer to bring me comfort.  But I do have my own atheist version of a prayerbook that I flip through when I am having a particularly tough time.  Here are some of the things in mine:

  • My rainbow socks.  I have a pair of rainbow socks that were given to me by a friend of mine.  She had Cushing’s and after a couple of really rough years post-op, has had a GLORIOUS recovery.  Rainbows have a very personal, emotional significance to her that I won’t share here because it isn’t my story to tell.   For me, I wear my rainbow socks when I am having a rough day or for doctor appointments because they remind me of my friend.  When I wear the socks, I feel a little bit of her there wishing good things for me.  When I see those funny little stripes peeking up at me, I think of her and it makes me feel like things are going to be ok because I know that she is ok.
  • A Carnelian necklace.  A friend of mine sent me this stone because the stone is supposed to help give you strength and clarity so you can manifest what you require to move onto your desired path forward in life.  As with my rainbow socks, the necklace makes me think of my friend across the country rooting for me.  Hoping that I can make clear decisions that are going to get me on the path to getting better.  Wearing the necklace makes me think of her and makes me feel a little less alone and discouraged on my down days.  Many a day I have held onto that stone for dear life as I browsed the internet, trying to find research articles that I hoped were going to get me one step closer to figuring this shit out.
  • An email from The Wizard.  After a big string of failed attempts to get diagnosed, including getting turned away by a local oncologist specializing in NETs, a negative Gallium-68 scan (to the tune of $6500 for the scan and travel out of my own pocket), and an email from my PCP saying she was refusing to order more tests, I sent The Wizard an email with an update.  At the end of the email I wrote, half in jest, “thank you for not abandoning me (yet).”  I got this one-line email back:  “I will never abandon you.”   It makes me weep whenever I look at it.  Whenever I think this current crap is never going to end or never going to get figured out, I look at that email.  Knowing he isn’t going to give up on me, when it became clear things were going to get hard to figure out, keeps me going.  I may not believe in God, but I sure as hell believe in The Wizard.
  •  Regular messages from a friend that just say “Don’t Jump.”  On more than one occasion, I would get out of a doctor appointment or get a result in the mail that was just another dead end and I would IM The Coven (a group of girlfriends I talk to every day), tell them what just happened and start or conclude the message with “That’s it.  I fucking give up.”  One of the Witches invariably responds with “Don’t Jump.”   I don’t know why, but somehow it is always the right thing to say.  It is the right mix of (admittedly twisted) humor and getting just how I feel.  If anyone else would say it, it would seem wrong (and probably horribly offensive).  But from this particular Witch, it is just right.   I don’t even need to see her write it anymore.  Now, when I start to feel despair, the words “Don’t Jump” immediately come to mind and I can’t help but smile a little and back away from the ledge.
  •   Despite the fact that I had some spectacularly bad luck with medical issues over the last few years, I have had some spectacularly good luck too.  Six months into getting sick, before I even had a clue something was horribly wrong, I went on a first date with the man who is now my husband.  Every step of the way, he has been by my side.  Saying and doing the right thing every single day.  When lots of other people that I had known a whole lot better and a whole lot longer just stopped showing up, he stayed.   He had every reason to say “this isn’t what I signed up for”  but he didn’t.  He just kept coming back.  I don’t fight to get better because of the strength I get from God.   I do it because I have the rest of my life, with M, to look forward to.   Some of it is going to suck.  But some of it is going to be really great too.  That’s not God balancing the good and bad, in my mind.  It is just life.

That’s what helps this atheist keep the faith.

I hate it when I am right

I had a follow-up eye appointment today.  After my trip to the ER in March with a “carcinoid crisis” my vision changed.  Some days, I couldn’t focus at close range, other days my vision was fine.  Some days I could read words on my computer screen but not my phone.  My vision was all over the place.

I had an eye appointment to make sure there was nothing actually wrong with my eyes five weeks ago, even though I am pretty sure this is just some weird hormonal thing.  I explained this to the ophthalmologist and she gave me a little wink and a pat on the shoulder and assured me that at my grand old age of 43, this was to be expected.  Bi-focal time!  Although I have no problem with bi-focals, if that is indeed what I need, I of course don’t think this is the issue and I tried to explain it to her that my vision isn’t the same every day.  But she wrote me up a prescription for bi-focals anyway.  I told her I wasn’t going to fill it until we were sure that I actually needed them….because my vision fluctuates…and she just gave me another wink and a pat on the shoulder.  Bless this dear patient.  She is too vain to admit she needs bi-focals.

I went back in today to have my eyes dilated and before she did this she decided to check my vision again.  Imagine her shock when she realized my vision was different than it was five weeks ago.  She checked over and over again.  How can this be?  I gave her a little wink and a pat on her shoulder and said “my vision fluctuates.”

We both agreed it probably made sense for me to wait and get a new prescription until we have a better idea of what my final vision is going to be.  I may not be vain, but I would be lying if I said I wasn’t feeling just a little smug.