My life as a House episode

I am writing this blog to share my experience as a formerly healthy person who gets a rare disease, my struggle to get diagnosed and get better and the crap that follows.  In addition to helping me cope with my current reality, I hope it helps some of you that are in the same boat to feel a little less lonely and crazy as you make your way through this process too.  If you want to read from the beginning, start here.

The Circle

Someone recently asked me to write a post about what to say/not say to people in your life that are struggling with a serious illness.  And although I love the idea of these posts and have gained a lot of insight from some of the posts on this subject that were written by others, I always worry someone will assume the post is about them  and get offended.  (There is always that one person that thinks everything is about them – you know who you are, you are reading this right now and asking “is she talking about me?”  Yeah, you.)  And I don’t want to offend anyone, but I do think there are many well meaning family and friends who DO want to be helpful and say and do helpful things but don’t know how.

Getting very sick at some point, I think, does help you develop some perspective on this.  And one of the articles I did read that really resonated with me is this one:

The article reminds people to think about where they fit in the grand scheme of what is going on in someone’s life.  This, I think, is key to being supportive.  Don’t put demands on people that are in the middle of a crisis.  This is not about you.  Think about how you can be helpful but not a nuisance.  Don’t make things worse.  The other point the article didn’t make but is just as relevant is: don’t disappear.   If you talk to people that get a serious, prolonged illness, this is the most heartbreaking thing you hear.  At some point, people just stop showing up or checking in.  And that doesn’t mean you have to be preparing a five course meal for your loved one or family member every day for years, but it does mean that you should regularly check in.

Having been sick changes how I view being supportive.  I think it has made me better at being supportive, but really you would have to ask the people I am trying to support to know whether this is true.  But here is what I am trying to do.  Someone very close to me, very suddenly discovered they have an inoperable, aggressive form of cancer that is going to shorten their life considerably.  And things have gone downhill fast since the diagnosis.  I love this person and their family very much and this is breaking my heart – so I can’t even imagine how they are feeling.  And they live far away, and so I can’t see them regularly as they go through this, although I am going to see them soon.  But I want to be supportive.  So here is what I try to do:

  1.  Sit down and draw out your best guess of the sick person’s circle  (see figure in the article I linked to above) and tried to accurately gauge your position in it. Doing this,  I concluded this is around Ring 3, which means my job is to support the immediately affected family and the family members that are directly supporting the inner circle (a member of my immediate family).  Going through this exercise helps remind you that not everything in life is about you.  And on that note, unless the sick person is your spouse or one of your children?  You are probably NOT Ring 1.  It might help to draw your own circle first.  If you are gravely ill and in the middle of your own circle, who is in Ring 1, 2 and 3 for you?  What ring does would the currently ill person belong to in your circle?  That’s probably how far out you are in their circle as well.
  2. Don’t try and get an all-access pass to Ring 1 if you aren’t welcome and don’t belong there.  Be respectful of the fact that Ring 1 might only want to talk to Ring 2.  But be close enough so that if Ring 2 is letting them down or is entangled in their own crisis, Ring 1 knows you are source of support.  How do to this?  Stay closely and regularly connected with the appropriate inner circle and run your support up the chain where appropriate. When I heard the news and after consulting with Ring 2 to make sure Ring 1 and the patient were up for phone calls, etc. I called Ring 1 and said that I would like to just regularly check in, but that they should not ever feel obligated to pick up the phone or call me back. The purpose of the calls was just to let them know (1) I was thinking of them and (2) Ring 3 was going to be here, consistently, for the duration.  And I then I tried to call at hours that would not disturb them every few days to talk or leave a message saying “I am calling to check in and say that I am thinking about you.  I hope everything is going ok today for you.  Please don’t feel the need to call me back or pick up – I will call again in a couple of days.”  And then keep doing it.  Keep checking in.
  3. Don’t obligate the inner circles to do anything for you.  Don’t make them feel pressure or guilt.  In my particular case, the regular calls are helpful and appreciated.  I know this because I am told the calls are appreciated and Ring 1 and the patient often call me to talk now too. If they had preferred not to hear from me at all?  That is A-OK too.  The goal is not to make you feel good about your support – the goal is to support them in the way that is most helpful.  Make sure they know that.  And for the love of god, don’t get mad at them if they didn’t comment on the special meatloaf you made for them or if they missed some important milestone in your life.  Don’t tell them how uncomfortable or upsetting your illness is for them or say things like “you’ll be fine” or “well, you look really good.”  Just sit down and try to imagine how you might feel if you were in their position, as painful as that might be, before speaking.  Even easier, read the dozens of great articles out there by patients that talk about what to say or not say (such as the link above) if you want guidance.  As the above article says, dump out, not in.  Think about what they are going through.  Think about how little physical and mental energy they have to deal with anything other than surviving the day.  And cut them a lot of slack.
  4. Offer concrete things you can do to help – not just “oh, let me know if you need anything” – but don’t push them.  Because I am at a distance, I can’t be there to drive people to appointments for example.  But I am a good researcher and I offered to try and look up treatments and look at pathology reports, read up on mutations, etc. so they had information and questions to ask their doctors.  They are overwhelmed right now and this was something they wanted help with.  I did not just send them piles of information, though, or give them unsolicited advice.  I still haven’t and I won’t.  I gave a list of things I could do to help and I followed through on the ones they wanted help with.  I can also fly out and help at a point where they DO need extra help driving to and from the hospital.  And when it is my time, Ring 3 will be there.
  5. If you are outside the first few rings, and you want to continue to have a relationship with the people in the inner ring, don’t just disappear.  It hurts to see people just stop showing up. They are already losing so much.  Don’t make them watch their friends and family disappear just because the situation isn’t comfortable for you.  Do the hard, but right, thing.  Just keep being there.  If nothing else, keep checking in with Rings 2 and 3.  Send cards.  Drop off food.  It’s not that hard and it means a lot.

As you know if you have been reading this blog, I have my own health problems to deal with, as do many of you. As the article (above) says, at some point everyone will get their chance to be at the center of a circle like this.  It is a sad reality but most people will have to face a life-ending illness at some point.  Most people will likely live through the death of someone very close to them.  Everyone will have to face their own death.  But so many of us handle serious illness and death so badly, hurting the people who need support the most.  It is never too late, though, to learn a new skill, to do something differently.  I am trying. I hope you do too.


Red Riding Hood and a Path Through the Woods

I saw the neurologist this week (I’m going to refer to her as Red Riding Hood from here on out).  After the examination and describing my symptoms to her and the neurology resident, Red Riding Hood asks me if I am having vision problems.  Intermittently, I do have trouble focusing and today is one of those days.  She has noticed my pupils are large and that they are slow to adjust when she shines light in my eyes.  I describe to her my discussions of this issue with my eye doctor over a year ago.  She asks me if I have been having digestive issues and if I have low Vitamin D and ferritin – and I do! This has been a consistent issue. I tell her about my malabsorption and other problems and she says “aaaahhhhhh….hhhhhaaaa” like this is what she suspects I might say.  She then tells me that she suspects I am experiencing autonomic dysfunction caused by a tumor somewhere.  She doesn’t think it is the pituitary tumor; it is likely whatever the NCI is looking for.  She thinks the smoke smell likely is a partial seizure disorder and prescribes an antiseizure medication and orders the EEG which I will have in a couple of weeks.  And we will go from there.  She asks if I have any questions and I don’t really have any, because I am completely taken off guard and don’t even know what to ask.

As I walk back to my office, I call my husband to fill him in and tell him the appointment was kind of mind blowing. It is not often someone is able to explain a huge number of my symptoms in one sitting like that.  The other amazing thing we talked about is how different doctors appointments are these days relative to even 18 months ago.  If I would have gone to a doctor 18 months ago complaining of smelling smoke, I would have been laughed out of the office.  Now, instead of being told I am just a head case, I really feel I am being taken seriously. Now, I don’t feel like I am being laughed at – I hear real concern.  It puts my mind at ease, because I am obviously concerned too and it is reassuring to feel someone who might be able to help actually gets it.

But as I walk and we talk, now I have questions. So maybe this can explain the symptoms, but what does it actually mean?  What exactly is causing the autonomic dysfunction?  Is this serious or not? Is it reversible? Ah Google.  How I love and hate you.  I tortured myself reading everything I could get my grubby little fingers on for two days and then realized I had to stop.  No matter what Google tells me, it doesn’t change the main facts.  Whatever is going on inside my own body, whatever is spitting out peptides, hormones, causing reactions and symptoms, is going to continue on its merry way whether I am sitting inside on my computer reading every study on paraneoplastic syndromes published since 1975 or sitting on a patio in the sunshine having a mojito.

I am smelling smoke. My vision is blurry.  I am tired and have a whole host of other symptoms.  But I am ALIVE.  And I am not on my own anymore, figuring this stuff out with just Google by my side, fighting to try and get a doctor, any doctor, to listen to me.  I’m not out of the woods yet, but I now have a team of doctors, my family, and a whole set of fellow patients making the journey with me. And it is really fucking sunny today.  Time to put away my computer and focus on living today.  Red Riding Hood can worry about the smoke for now. 



Where There is Smoke….

Since the end of February I have been experiencing a new and unusual symptom.  I started randomly smelling smoke every once in awhile, usually at night while watching TV.  I would ask my husband repeatedly if he smelled it too, but it was always just me.  It never lasted long, but it was odd. I have two teenage stepsons with rooms above our TV room and I even wondered if one of them had started smoking on the sly.  But then I started to notice the same smell in my car driving to work, in my office, in meetings.  This was not a teenage experiment with cigarettes – this was me.

I reached out to my PCP, Yoda, concerned that maybe I had started to get some sort of sinus infection. My nose was kind of stuffy and I was having trouble breathing out of it, but this had sort of been the case for a few years.  I saw an ENT who took a look inside and didn’t see any sign of infection but decided to get a CT scan of my sinuses just in case.  My sinuses looked good on the CT scan as well.

What the hell.  Smelling smoke, I learned the hard way, is one of those symptoms you don’t want to Google.  Nothing good comes up, except sinus infection.  And it didn’t look like I had a sinus infection.  I got really pissed off about this.  I had made a deal with my body:  I would keep working hard to fix her outstanding issues as long as there were NO NEW PROBLEMS.  I had diligently chased down and dealt with an extremely long list of problems in the last 3+ years.  And I was still chasing down a small list of problems.  This was manageable – as long as my piece of shit body and I stuck to the agreement.  NO. NEW. FUCKING. PROBLEMS.  PLEASE.  Just for six months.  A year.  Just let this stop for a little while.

My appointment at the NCI occurred while I was waiting to see the ENT for a follow-up and so after covering the NET related symptoms, they asked me if I had any other symptoms that they should know about.  I hesitated for a second – because I don’t even want to acknowledge at this point it could be another problem and I also worry it makes me look insane – I say, “well, I smell smoke sometimes.”  And I really feel like that kid in “Sixth Sense” when he says “I see dead people” at this point.  It’s a weird symptom!  But by the time the NCI appointment rolls around, I have been smelling smoke for 7 weeks and it is getting worse.  I decided to keep a “smoke journal” for a few days, just so I could relay accurate information to whatever doctor was going to ultimately sort this out.  So, I took note of every time it happened, what I was doing when it happened and how long it lasted.   Writing it down made it clear it was happening for 1-2 seconds at a time, about 20 times a day.  I did that for two days.  It stressed me out and I stopped taking notes.

The oncologists at the NCI tell me I need to go home and get a brain MRI and an EEG and send it back to them.  They tell me this two times.  As we were leaving the appointment, the oncology fellow grabbed my arm and told me to get the tests done  as soon as I got home a third time.  I get it, I hear you, I will get the tests done.  They speculated that it might be a partial seizure disorder, they have seen this in one of their patients.  They did try and reassure me that this could be a result of having had neurosurgery.  But please get the tests done as soon as you get home anyway.

It turns out I can’t get the EEG without a neurologist and getting in to see one is going to take time.  But I did get the MRI done.  The good news?  It’s very good news.  There is not a big ole brain tumor in the middle of my frontal lobe causing the symptoms.  There are a “few nonspecific foci of FLAIR hyperintensity in the subcortical white matter of the frontal lobes” which a little Googling tells me sounds like the kind of thing that can show up on an MRI for patients with seizure disorders.  But honestly, I have no clue if that is significant and the radiologist said it could just be a sign of small vessel disease and I have no idea if THAT can cause these symptoms.  Hopefully, the neurologist  has something to say about this.

Oh yeah, there was one other thing that showed up on the MRI:  “Asymmetric soft tissue prominence along the right aspect of the pituitary gland with minimal deviation of the pituitary stalk to the left. This may represent an adenoma.”

There might be another pituitary tumor.   I looked at the MRI images, and my right side does look a lot bigger than the left.  Is this post-surgical changes?  Or another fucking tumor?   I immediately get in touch with the Wizard.  He doesn’t think it sounds like I have Cushing’s again, but does send me 8 cortisol tests to complete, just to make sure, and tells me to send him the MRI images.  And he sends me some reading materials that suggest other patients with pituitary and/or thyroid problems have reported smelling smoke as well.  And I have – very recently – started breaking out in acne again and getting very weepy.  And I am feeling fatigued.  I cut back my hours at work a little to try and get more rest in.  All of these symptoms were initial signs of Cushing’s last time.  But maybe its a coincidence?  Maybe I am in denial?  Only time and testing will tell for sure.  I know the drill.

Motherfucker.  I am so mad at my body.  I feel so betrayed by my body.  I hate my body for doing this to me, over and over.  For a long time now, I have started to see my body as a separate entity from myself.  This allows me to get very angry at someone for doing this to me without directly blaming myself.  Not saying this is normal or healthy.  Only saying it works.

I still need to see the neurologist and hopefully get the EEG – that happens next week.  Hopefully between the neurologist and the Wizard we can figure out why I am smelling smoke and if indeed there is another pituitary tumor or something else going on.



Two Worlds Collide

I have been on a quest since last July to get a second opinion on my thymic pathology, but it hasn’t been totally clear who (and how!) to get someone to look at it. But for some random reason one day, I did a search of clinical trials relating to pathology and stumbled onto a trial that sounded perfect for my lump of tissue:  a tissue procurement trial at the National Cancer Institute that was collecting specimens from people with lung/thymic malignancies and then collecting natural histories of the patients (this trial is not for treatment itself, just to follow the course of the disease)!  I right away sent off an email to the oncologist running the trial, explaining my situation – I had symptoms and an Octreoscan suspicious of a thymic NET, had surgery, got quite a bit better, but nothing was found in the pathology.  I told them I realized I might not fit their criteria, as I am not a pathology confirmed NET, but boy would I love to give them my tissue if they were willing to take a second look.

A few days later, I received an email from a clinical thoracic oncologist at the NCI who specializes in thymic malignancies.  He saw my email and reached out directly, telling me that they were willing to see me in clinic and evaluate me, regardless of whether they admit me in the study.  I just had to send my scans/operative reports/pathology reports and make an appointment to come to Bethesda.  This was much better news than I had been hoping for and I was of course happy to do it. It turned out that I was already going to be in DC for a work conference for almost an entire week in the near future and so I decided to try and be efficient by combining my trips.

The timing worked out well.  I was able to set things up so that I could work for two days, do medical stuff in the middle and then go back to work at the end of the week.  I had been trying to keep work and this medical stuff completely compartmentalized as I have zero idea how to integrate the two in my life (and I am still not sure I want to).  So, aside from a couple of people at work that were close to the situation, no one had any idea I would be doing anything other than working on this trip.  And for now, I planned to keep it that way.

Lucky for me, my ever-helpful SIL was nearby and able to accompany me to the NCI when the day of my visit arrived.  She was also able to stay with me the night before and after the trip.  The night before and the morning of the trip, I was a little nervous.  It is still very hard to fight the fear that I am not going to be taken seriously – I really feel scarred by my many bad prior medical experiences, despite the fact that these experiences are few and far between at this stage in the game.  So I always go into doctor appointments, even with doctors I know and trust, fearing I am going to be turned away.  I just kept telling my SIL that my goal was to get them to take my tissue. If I manage to accomplish this?  I will have met my goal.  But I was worried I came all the way here for nothing.

I have particularly mixed feelings about the NIH.  I was evaluated at the NIH for MEN1 in January 2015 and remain extremely grateful that they admitted me to their study.  While I was there, they did a bunch of scans and the Octreoscan at the NIH was where the potential problem with my thymus was located.  And it would have been almost impossible for me to get my thymus out as quickly as I had without that scan.  That’s on the positive side. On the negative side, I had less than favorable experiences with some of the doctors that had evaluated me at that time.  And despite everything that has happened over the last few years, they don’t believe I have MEN1 and won’t follow me further, unless my hyperparathyroidism comes back.  But this is a new day and a new set of doctors.

My SIL and I go through the usual routine – meet with the fellow, go through a detailed history and then see the team.  And what happened next shocked both of us.  The two thoracic oncologists said, with zero hesitation, that I had a thymic NET.  That no other explanation made sense.  Between my symptoms (and I had brought pictures of my flushing episodes as well as office notes where Gandalf described in detail the sudden onset and appearance of an episode he witnessed), my Octreoscan and the fact that the coughing and wheezing stopped completely and abruptly after surgery, there was nothing else it could be.  There was no alternative diagnosis on the table.  This is what I always thought.  But it is a hell of a lot different hearing it inside my head and hearing from a doctor.

My diagnosis was “thymic NET unless proven otherwise.”  Someone actually said it out loud, with no other qualifiers.

This is important because without a diagnosis, it is hard to get treatment or be followed.  And this is the best part of the whole meeting. These things have relatively high recurrence rates and so they want me to come back for Octreoscans and CT scans of my chest/abdomen/pelvis every 4-6 months for the foreseeable future and then annually indefinitely.  And of course, since I still have symptoms, this has been a major concern for me as well.  I am very concerned I either have another NET somewhere, that the NET I had has spread, or that there is still a piece of tumor hanging out in my chest somewhere.  And all three possibilities were also acknowledged by these oncologists.

The NCI is going to obtain ALL of my pathology – pituitary/parathyroid/thymic and have their pathologists review all of it.  They were not overly surprised by my negative pathology, they have seen this happen before.  One of the oncologists said that this stuff is so rare, there is a chance the pathologist didn’t even know what he was looking at.  The other possibility, of course, is that the tumors were so small they would be easy to miss – which sounds so crazy, but again with this disease it happens.  In any event, they couldn’t guarantee they would find anything, but would take another look.  Goal met and exceeded.

We also discussed another strange new symptom that I have developed that I thought was likely unrelated but worth mentioning just in case.  They told me, repeatedly, I needed to go home have it evaluated.  They wanted me to get a specific set of tests and to send the results back to them.  I will come back and talk about that in another post.

As you can imagine, this was a very positive development in some respects but scary in others.  I feel a bit like I had a crazy JFK conspiracy theory and just discovered it was true.  I always believed this was my diagnosis, but not having it confirmed took the sting out of it.  I now can let go of the fear that I might have had a thymic NET and wasn’t being followed and replace it with the fear that I had a thymic NET.   It is less hypothetical and more real now, even though nothing has actually changed inside my body.

I was supposed to attend a client’s cocktail party that evening for work with a few of my colleagues, but I just couldn’t do it.  I was feeling very shell shocked.  I didn’t cry and wasn’t upset, but felt sufficiently close to that edge that a glass of wine and the wrong comment could get me into that territory and a work function was not the time for it.  I had sent an email to my colleague, letting her know that I wasn’t going to make it and why and her response was “Where are you?  I want to hug you.” and even that forced me to take a few deep breaths and blink away tears.  So my SIL and I decided to grab a bite at a restaurant close to the hotel where we wouldn’t run into anyone.  I was going back to the NCI for my scans the next day and would then close the medical compartment and open up the work one again.  But until then?  I was living in the not-suitable-for-work box.

Our plan sounded great until we walked into the restaurant and discovered the cocktail party was being held in the same place we had decided to come for dinner.  And of course, there is a group of my colleagues, looking at me with a confused expression and waving me over, while I stand there trying to smile and shake my head no.   The colleague I emailed came over and told us to come join them.  I introduced my SIL and said this was an accident, we weren’t here for the party, we were just trying to grab a quiet dinner together and unwind after a stressful day.  And so she sent us on our way.  But as she turned to walk away, she grabbed both my shoulders and gave me a hard kiss on the temple.  It makes me cry just sitting here writing  about it, I don’t know why.  I can’t quite explain in words how it felt for my two worlds to collide – but something about that encounter had me pushed me to the edge of a complete meltdown.

And the meltdown arrived the next morning, when I had a good long cry before returning to the NCI for the first round of CT scans.  I still felt pretty frazzled and, after getting caught in the rain on the walk back from the subway to the hotel, was not up for the  evening’s planned work activities.  I had received several emails from colleagues in other offices that wanted to catch up while we were all in town, and ran into two more colleagues I wanted to see in the elevator, but claimed I had an upset stomach and promised to see them tomorrow.  I had a quiet dinner in my room, watched some truly wonderful/terrible reality TV, and closed the sick box.  Friday morning, I woke up in my work box and picked up where I left off on Tuesday.





Sherlock Holmes

After recovering from surgery #3 in September, my list of remaining problems was pretty small and relatively manageable:

  1.  It wasn’t clear if the parathyroidectomy I had in September worked, as my calcium and PTH weren’t that much lower post-op then they were pre-op.  It can take awhile for the labs to settle down, though, and it turned out that was the case with me.  If there is one thing my body really likes to do, consistently, it is generate unclear and unhelpful labs!  But, slowly and surely, both my calcium and PTH kept dropping.  Six months post-op, my calcium was 9.4 and my PTH was 38.  SUCCESS!!
  2. I had a weird looking MRI of my sacrum that had elicited a wide range of opinions that someone needed to explain to me and some back pain in the same area. The back problems and pain I will come back and talk about in another post.  But the good news is that the weird looking spots on the MRI have now been interpreted as benign.  The consensus now appears to be that my chronic pain is coming from some disc degeneration and it might be fixable with the craziest PT I have ever heard of but have nevertheless committed to completing.  Given all the crap that has gone on, it is hard to be totally comfortable with waving off any sort of unusual lump or spot on a scan these days, but as you will see in some future posts, I will be able to keep an eye on it anyway, and that makes me a little more comfortable.
  3. I continue to have “flushing lite” and GI problems that never went away after surgery.   As you might recall from earlier posts, I had a thymectomy in June of last year.  Prior to the thymectomy, I suffered from non-stop coughing and wheezing, and I frequently had very angry looking flushing, typically with a purple focal point in the middle of my chest and red blotchy flushing up my chest and neck. The flushing started around December 2014 and the coughing starting in February 2015.  I had GI problems throughout this period too.  It seems I stopped digesting my food around October 2014 and by March 2015, I started having episodes of very watery diarrhea.  I luckily was able to see Gandalf and have surgery in June 2015.  After surgery, the coughing stopped completely and the angry purple flushing midchest disappeared.  What I was left with was a lighter, diffuse flushing and the GI problems.

The rest of this post is about the quest to figure out the rest of the GI problems and flushing.  This investigation started in October of 2015.  Spoiler alert:  we still don’t have an answer, but I do think we are making progress.  Gandalf referred me to a GI doctor that he likes and, having seen this doctor now for six months, I can see why.  I am going to call him Sherlock Holmes because he strikes me as a careful thinker who really likes mysteries.  He has spent much of this time systematically ruling out everything else this could be besides a NET.  The reason he is doing so is that he doesn’t want us to get fixated on a NET and ignore other potential explanations for my problems (although in my mind I am screaming OF COURSE IT HAS TO BE A NET!).   He is also running NET tests, but NET labs have always come back negative and, frustratingly, continue to do so.

The reason we are not 100% fixated on a NET is because, as you may remember, I had a positive Octreoscan before the thymectomy, I got way better after my thymectomy, but the pathologist didn’t find a tumor in my thymus!  This was a very frustrating development, because without positive pathology there was no plan at all for follow-up or treatment for what could very likely be an aggressive type of tumor.

You might be saying to yourself at this point – big deal, you get a red neck and chest and have diarrhea once in awhile.  Just go live your life! That’s not debilitating.  Just live with it!  That’s a reasonable reaction.  And I am living my life and living with the symptoms for now. I am lucky – I am not struggling for air, exhausted, or trapped in the bathroom like a lot of patients I know that do have a NET.   But this is exactly why I can’t just forget about it.  If this is a NET (and I don’t think it can be anything else, given what’s happened so far), then it is going to continue to grow and get worse.  Ideally, if we can find it and remove it now, I have a decent shot of catching it before it spreads (or spreads too far).

So far, we have ruled out mast cell disorders, celiac disease, Crohn’s, IBS, you name it.  And we figured out something interesting.  Pre-thymectomy, I discovered (through a patient support group for NET patients on Facebook!) that antihistamines helped control carcinoid syndrome symptoms for some patients.  So I tried it and it worked! If I took histamine, I stopped coughing and wheezing could have a decent day.  After my thymectomy, I stopped taking the anti-histamines, as I figured I didn’t need them anymore.  In January 2016, Sherlock Holmes asked me to start taking H1 and H2 blockers daily to see whether they would help eliminate my remaining symptoms.  And to my surprise, over the course of the next six weeks, my GI symptoms slowed down and then disappeared! Completely!  I hadn’t seen things look this normal in 18 months and was amazed.  I was still flushing, but it wasn’t getting any worse at least.  But the GI stuff completely resolved.

Then the meds stopped working.

The Twilight Zone

It’s been about five months since my last post.  I have thought about writing many times, but I have avoided it. Sitting here today, it is hard to write.  Many days, for lack of a better expression, I still feel very disoriented.  The last several months have felt a lot like an episode of the Twilight Zone.  I feel like I left my office one day, entered a time warp, and returned to the same place two years later.  And at first glance everything looks the same as when I left, but when you take a really close look, nothing is the same.

For the first few weeks, I kept waiting for the wheels to fall off.  I worked 20 hours, then 30 hours then 40 hours a week.  With each increase in hours, I worried I wasn’t going to be able to handle it physically.  But I kept working more and more and nothing bad happened.  I moved up to 50 and 60 hours.  Still, no problem.  I didn’t start to run into problems physically until I hit a stretch of weeks where I was working 70+ hours a week.  Then I did start to feel exhausted and overwhelmed.  But that’s pretty damn good, in my books.  It took my body some time to get used to sitting/standing at a desk for prolonged periods of time.  There was a whole pile of muscles that I hadn’t been using during the period of time I was spending many hours a day in bed.  But eventually, the muscles adjusted.

Mentally, the transition back to my regular life was a lot harder.  This I foolishly didn’t anticipate at all.  I can’t really put into words what it feels like to leave your office one day and not come back for two years.  Everything was the same and everything was different.  The place had kept moving along, cases and lives moved along during those two years.  My life just stopped.  It was really disorienting.  I felt a bit like Tom Hanks in Cast Away after he returns to civilization.  Did I still really have a place here?  Would I be able to find a new place here?  Could I handle the hours?  The old me loved the high stress, crazy hours of my job.  Would the new me feel the same way?  Who the hell is the new me anyway?

I felt completely off balance and untethered for the first few months back.  Slowly but surely, I have started to regain my footing and get reintegrated.  There were lots of discouraging and overwhelming days and hours, but little by little I started to feel at home at work again.  I have a lot of support at work and at home and that helped a lot.  But it has not been easy.

When I got sick I felt like I completely lost my identity:  I didn’t look like myself, I couldn’t function like myself.  My work and running were a huge part of my identity and I lost both.  While I was sick, I developed a whole new circle of connections to people that were sick and struggling with the same disease I had, people who also got ripped out of their normal lives and were trying to come to terms with their scary new reality too.  I am functioning very well now, but still have signs of some problems and feel like I am standing with one foot in each of my former worlds – my former healthy world and my former sick one.  I don’t feel like I completely fit in either one anymore.  The big challenge for me right now is figuring out how to integrate them both into what is yet to come.





Back to Work

I have now been back to work for the “first” time (full disclosure: I had a few failed attempts) in two years.  The first few days were a strange, disorienting experience.  I felt like a burglar sneaking into the building, fully expecting my pass to set off alarms when I went through security.  I had a nagging worry my office wasn’t going to be there.  I stopped by a colleague’s office – a dear friend – before going to my own office to try and delay facing what I feared: I had no office or job and somehow no one told me before today.  My friend (who is much more senior, delightfully direct, and would obviously have known and told me if I had no job to come back to) had her back turned to me when I knocked on her open door and said “give me a minute” a couple of times before turning to face me, while I stood there with a growing knot in my stomach.  And then she turned around and saw me and yelled my name and ran over and gave me a big hug.  One hurdle down – it didn’t appear they were going to throw me out of the building.

Now for hurdle number two.  Together, we walked over to my office – I really did have myself convinced at this point my office had been moved.  And let me say, this is not a crazy belief to hold after being away from your job for two years.  How many firms would hold a person’s office for them for that long, especially when it is unclear if and when the person is coming back?  I really loved my office too.  It was in a great location, in a quiet corner with floor to ceiling windows on two sides.  Many times, I thought about my office when I was sick.  All the light coming in, the view out my window.  I know it may seem strange to think about this kind of thing, but that office was my home away from home.  I could imagine people asking why someone else didn’t get this office, especially as our firm had been growing rapidly and running out of space.  I could imagine my stuff being boxed up, my painting and photograph being taken off the wall and packed up and moved to a darker, more temporary office.  Again, I recognize this may sound like a weird thing to be thinking about when you are in the middle of a health crisis, but this thought did cross my mind many times.  I suppose the act of imagining someone taking the pictures off the wall in my office represented my fear that I was never going to get this huge piece of my  identity back.   This fear was almost tangible as we made our way through the corridor.  And then I walked in and saw everything was the same as the day I left.  My pictures were hanging on the wall.  My coffee cup was still sitting on my desk. Even the tube of Chapstick that I kept between my computer monitors was still waiting for me to pick up as I used to do as I read through my email first thing every morning.  It was all there, every last physical detail of my life in that office, exactly where I left it.  And then it all of a sudden felt like the last two years were just a bad dream, that I was just coming back to my office after the weekend.

I went back and forth between these feelings for most of the week – I either was in the building illegally and  waiting to get caught or the last two years simply didn’t happen – as I slowly started to get everything working again and get reconnected with people at work.  So many people stopped by my office those first few days.  Like me, they were also in shock I was back.  Some people ran over and hugged me.  A few people blinked back tears.  I did too.  I can’t quite put into words how it all felt.  All I can tell you is that it was one of the strangest and happiest weeks of my life.

I had to figure out a way to try and ease back into work while I figured out how much work I could physically handle.  I am so much better than I was even a month ago, but I still tire pretty easily.  At the end of a few hours in the office, I realize that the muscles I use to stand or sit for extended periods of time feel sore and exhausted.   My abs were literally sore from sitting upright.  That gives you some idea of how much time I had been spending in bed.  And although I tried to wait to come back until I was relatively stable, it had really only been six weeks since surgery #3 and I still had some outstanding problems.  Was my body going to be able to handle the regular stressors of work?  The work our firm does tends to involve some erratic hours and a fair amount of stress.  The unpredictability of the job was one of the things that (in moderation) made the job fun and exciting.  But how would my piece of junk body feel about it now?  The plan was going to be to try to find the right balance of “exciting and erratic” and “calm and predictable” hours.  I was also going to start with part-time hours and slowly ramp up to full-time (which around here is typically 50+ hours a week) gradually.

The other big problem I had to deal with after my first week was the fact that I literally had nothing to wear.  When I left work the first time two years ago, I was a size 2 and had a closet full of clothes.  The first set of tumors caused me to gain 70 pounds.  The second set of tumors made it extremely hard to breathe and I was barely able to get around.  It was impossible to lose the weight, due to ongoing hormonal problems and the fact that I could not exercise at all.  I have been able to lose over 20 pounds between July and now, but obviously still have a long way to go.  Buying new clothes while I was at this “transition” weight was something I avoided doing unless absolutely necessary because it wasn’t very fun, frankly, and I didn’t want to waste money on clothes that I didn’t plan to fit into for very long (if you are thinking “it’s been two years already, just buy some clothes and don’t worry about your appearance” you can shove it up your ass.  It’s a lot harder than you think.  Go gain 70 pounds and then just get over it.  Please let me know how that works out for you).  So when I went into my closet and realized I own one pair of pants that were work appropriate and fit, I knew I was going to have to do something about this whether I liked it or not.

Luckily for me, I have a secret weapon – an incredibly stylish and talented sister-in-law.  We went through my closet and tossed or stored everything that didn’t fit.  She then helped me to order a few things that will be the work wardrobe to get me through what will hopefully be losing the next 50 pounds or so (if all goes according to plan).  The gods are clearly smiling on me as ponchos are very much in style this year – and they come in one size!  Many of them are dressy enough for work.  With a stretchy pant and some nice shoes, I hope to continue to shrink underneath the poncho of the day.  I now have a work uniform that can get me through this transition period.  I couldn’t be happier.

The weekend after my first week of work, I attended a brunch at the home of my friend, the one who walked with me to my office for the first time.  The brunch was to celebrate my marriage to M back in April.  Two of my other colleagues were also invited to the brunch, along with their spouses and children.  All three of these colleagues are in the most senior positions in our firm and are, in one capacity or another, my bosses.  We have been trying to coordinate this brunch since April, but between their bruising schedules and the fact that I have been very sick and unreliable, it has taken awhile to find a date that worked for everyone.  This weekend turned out to be the perfect time to celebrate.

The morning of the brunch,  M and I were running around doing some errands.  As I was driving alone in the car, listening to the radio, enjoying the fall foliage and looking forward to seeing everyone at this brunch, I was struck by a wave of gratitude out of the blue and started sobbing.  I was feeling better.  Not perfect, and I didn’t know how long it was going to last, but at this present moment I felt better.  A lot better.  I had started dating a wonderful man just as I was getting sick and he stuck with me through all this and married me during the worst of it.  I worked at a firm that not only didn’t boot me out when I got sick and had to take a long leave of absence, they made me feel like a long-lost relative when I came back.  I had bosses – the people I was going to have brunch with in a few hours – that were smart, funny, kind people who not only facilitated this process at work, they KEPT COMING TO SEE ME THE ENTIRE TIME I WAS SICK.  Every single month, the entire time I was ill, I saw at least one of them at my home.  I can’t tell you how many bouquets of flowers, gift baskets, and plants my firm sent me after surgeries, hospital stays and setbacks.   I appreciate the flowers and goodies very much.  But I can’t even begin to tell you what the regular visits did for me.  Anyone who has been sick for a long time can tell you how truly extraordinary this is.   That they didn’t give up on me and just disappear helped me keep hope alive when things weren’t looking or feeling very hopeful.   Later this morning, I was going to celebrate all of these wonderful things and wonderful people.

I used to think the phrase “stop and smell the roses” was just a stupid cliche.  Forget smelling the roses.  I am going to hurl myself into the rose bush every single day for the next while.  This period of time feels so magical after the past few years.  I plan to embrace every second.