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.

Lean In

I just got my first round of labs back after my parathyroid surgery in September and the results were very disappointing:  my calcium and PTH levels are exactly the same as they were the day before surgery.   It is not 100% certain at this early stage, but this likely means we didn’t get all the bad glands during surgery.  Merlin was only able to locate three parathyroid glands (most people have four, but people can have less than four or way more than four as well) during surgery and two of the glands looked healthy so only one was removed.  Does this mean there is still another bad gland hiding somewhere in my chest?  Time would tell but it looks like the writing is on the wall, at least in chalk.

I am not at all upset at Merlin – I think he was very thorough and careful.  He spent 3 1/2 hours exploring my neck and the top of my chest during the surgery.  He removed one hyperplastic gland. He biopsied all of the remaining glands and removed a bunch of lymph nodes and some residual thymus as well.  For all these reasons, I am very glad I had the surgery and I am glad Merlin was my surgeon.   I also knew there was a very high probability I would need another parathyroid surgery down the road, as the two tiny healthy glands that he did find and biopsy were likely going to eventually go rogue at some point too.  But I did hope for a few years between now and then with no parathyroid problems in the interim.

The really crappy thing is that I had decided today was the day I was going to try and start transitioning back to work.  Maybe just a few hours a week, but I wanted to try.  I certainly don’t feel well enough to work full-time at this stage.  I am not even sure how consistently I can work part-time.  But I feel well enough to at least try.  I loved my job and I miss work.  I miss my colleagues.  I miss feeling like a productive member of society.  I am not saying that is how people that aren’t working should feel, but that is how I feel.  Work was a huge part of my life and I liked it that way.  Getting back to work, for me, means getting back to normal.   I am not ready to let go of my career, not even close, despite the fact I have been off work for the last two years.

I had initially planned on going to work first thing in the morning.  That changed when I got the email with my labs.  I needed to process these results, which were clearly a setback.  I was doing pretty well for the first few hours this morning.   I was going to do a few things at home, go for a walk, and then try going to work in the afternoon.  I made my way onto the bike path behind our house and I wasn’t even a mile from home when I started sobbing.   The disappointment hit me hard.  Why can’t anything just go smoothly?  Just once?  I am sick of surgeries.  I am sick of problems.  And what did this mean for my ability to go back to work?  How can I go back to work, knowing it is probably temporary?  How many surgeries are still coming?  How many hours am I feasibly going to be able to work?  Will I ever be able to work like my old self again?  I just felt so overwhelmed and defeated.

I called a dear friend, my sister-in-law, to vent about this news as I walked and bawled.  She commiserated with me and then reminded me of a very important fact:  I AM getting better.  Twice now in the past two years, I have been so sick that I was bed bound because of two different sets of tumors.  Twice, surgery made me better.  I am nowhere close to 100% better.  I am still pretty weak, I tire easily, I am still carrying around an extra 50 pounds from tumor #1.  I am only at about 60% – but that is a hell of a lot better than the 5% I was at before.   A good cry and this reminder did make me feel better.

The other thing that made me feel a lot better was the words of wisdom from another very smart woman – Sheryl Sandberg.   One of the partners at my firm, another amazing woman who became partner at a crazy young age and manages to balance a young family and a demanding career with grace, recommended the book “Lean In” to me some time ago.  I decided to listen to the book on Audible while I walk as a way to pass the time.  After I finished my phone conversation, I decided to pick up where I had left off in the book at the end of my last walk.  As I sniffled my way along the bike path, listening to the book, I felt like Sheryl Sandberg was talking directly to me.  She was talking about one of the biggest mistakes she sees women make in their careers – women that are planning to have kids in the future often start scaling back the types of projects they take on and the role they play at work well before they get pregnant in anticipation of the fact that they will be taking time off to have a baby in the future.  Sandberg tells her readers that this period of time – the time when you are anticipating having to take time off in the future – is exactly the time to “lean in” and take on challenging projects.  Work while you can.  Take off time when you must.   Good advice for women planning families and good advice for me.

I walked home, washed the tear marks off my face, and started to get ready to go to work.

Taking Stock: October Edition

Here’s what is currently taken care of and still outstanding.  The to-do list is slowly getting shorter!

Here are the problems that have been solved:

1.  Pituitary tumors causing Cushing’s.  I had neurosurgery to remove these in February 2014.  So far, no signs of a recurrence.  Diagnosed based on symptoms, multiple labs indicating high cortisol and a dynamic MRI indicating the presence of pituitary tumors.

2.  Thymic carcinoid.   I had thoracic surgery to remove my thymus in June 2015.   Diagnosed based on carcinoid syndrome and Octreoscan indicating area in anterior mediastinum suspicious for a neuroendocrine tumor.  My coughing and wheezing stopped completely post-op and have stayed away over the past 3 1/2 months, despite the fact that the pathologist didn’t find a tumor AT ALL.  My pathology has been sent away for a second opinion.  I am still flushing and the flushing is triggered by the same set of things, but the flushing is much more mild than what it used to be.

3.   I had a repeat Octreoscan in August.  The Octreoscan was read as negative, but I saw some spots lighting up near my sacrum and my liver looked “mottled” during the 24 hour scan (the latter according to the radiologist).   I went to see some out-of-town neuroendocrine experts about my situation.  They changed the read on the Octreoscan from “negative” to “positive” according to their nurse (I haven’t spoken with the oncologist myself since seeing them).  They also read the 2014 MRI of my sacrum as “abnormal” and ordered a new MRI.   The bone doctor agreed that the Octreoscan and MRI didn’t look normal to him either.  But so far, I don’t think anyone yet knows what the significance of the findings are.

4.  I had parathyroid surgery and a hyperplastic gland removed September 2015.  To everyone’s surprise, I also had a thymic mass removed (along with 14 lymph nodes)!  Pathology came back as normal thymic tissue (of course) and I don’t feel any different, but it is interesting to me nonetheless.   New labs to see where my calcium and PTH are now that surgery is over are pending.

5.  I let the NIH know what has been going on, as I was part of their MEN1/hyperparathyroidism study.  The genetic counsellor at the NIH confirmed that I meet the clinical criteria for MEN1.  They want to see me back there if my calcium starts to creep up again.

6.  My IGF-1 was dropping steadily over the course of the last six months, so the day after I had parathyroid surgery, I had a glucagon stim test for GH deficiency at the request of the Wizard.   The pituitary surgery I had last year can cause permanent damage to the pituitary and lead to a decline in the hormones secreted by the pituitary as a result.  Since GH is one of the first pituitary hormones to be affected if the pituitary is damaged, and since IGF-1 is stimulated by GH, doing the stim test made a lot of sense.   It was pretty unpleasant getting this test the day after surgery (the doctor administering the test told me I was very brave before we started and now I know why – it made me pretty nauseous and required repeated blood draws over the course of four hours on a day I really would have preferred staying in bed).  But it is over and I am glad I did it.  The good news is that I passed the test – it doesn’t appear that I have GH deficiency, which hopefully means my pituitary is functioning just fine.  So why is my IGF-1 so low?  This is far from confirmed, but it does increase my suspicion that I have too much somatostatin (which inhibits IGF-1, TSH, glucagon, gastrin – all of which are too low based on my labs).  Somatostatin can be produced by NETs (and we suspect I still have one) and too much somatostatin can also cause malabsorption (which I have as well).  Hopefully a biopsy or some other future testing will shed some light on this issue soon.

Here are the remaining problems and where I am in terms of chasing them down.

7.  I am waiting for either the bone doctor or the NET experts to tell me what the abnormalities on the MRI and Octreoscan mean (if anything).  The new MRI was read locally as clear of masses, but the new MRI looks worse than the one I had last year (the bone doctor has seen the images and agrees what we see certainly look like lesions) so I will be curious to hear what the experts have to say about this.  I was told the most likely next step was going to be a bone biopsy to see what these things are.   For now, I wait for everyone to get back to me with their official thoughts on the scans.  I have more pain and pain in new spots that also look suspect (to me) on the MRI so I am anxious to get this sorted out.  Stay tuned.

8.  I am still having some malabsorption/digestion issues.  This is going on over a year now.  The good news is that Gandalf is back (yay!!!) and has referred me to a GI doctor that he describes as a “very careful and thorough diagnostician” which sounds like exactly what I need.  This GI doctor is in high demand and so I have a bit of a wait until I will get to see him, but I very happy the ball is rolling.

9.  I found what looks/feels like a little growth behind my ear.  Getting a dermatology evaluation for this soon.  MEN-1 patients tend to get lipomas, which are benign growths under the skin.  Based on my reading, it looks and feels like this is what it could be.  Let’s see what the dermatologist says.

In terms of symptoms, I am left with some relatively minor flushing (as long as I avoid stress), my GI issues, quite a bit of fatigue, and some growing bone pain.   All could easily be explained by my ongoing problems, I think.  Except for this thing behind my ear, NO NEW PROBLEMS!!!  For so many months, going on years now, I feel like my body turned on me and waged a multi-pronged attack on itself.  I finally feel like I am gaining on it now – removing problems at a faster rate than they are piling on.  I feel somewhat optimistic there will be a day in the foreseeable future where I might not have new problems to fix for awhile.