(Mis)Diagnosed

Wednesday, May 25, 2016.  I remember driving down Heathcote Road and taking a right on the Post Road pretty vividly on Sunday morning April 24, 2016.  I took the Post Road straight to White Plains Hospital.  [The only reason I knew where to go — I have a terrible sense of direction — was because Brandon was born at that hospital.]  I remember speaking to Jen, getting choked up when I explained they found a mass, and her telling me that she and her Dad (who literally drove in reverse on the Cross County after having just left our house to head back to Philly) would meet me at the hospital.  But I don’t really remember anything else.  I didn’t make any phone calls other than the initial call to Jen.  I don’t recall what, if any, song was playing on the radio.  I parked my car in the emergency side lot, checked in at the front desk (they were expecting me) and waited.  I knew something was very wrong.

Jen and Lenny arrived quickly.  I have a wonderful relationship with my in-laws and have spent a ton of time with them over the 14 plus years I have been with Jen.  I know when my father-in-law is concerned.  And he had that look on his face.  But thank god he was there.    After getting past the “initial” holding room, where they took my vitals and asked some basic questions, I was put into a room and introduced to the ER doctor on call.  I remember her being very nice and holding my hand as she explained that they found a 4 1/2 inch mass in the middle of my chest.  But the holding of my hand only made it harder to breathe as I could sense an extreme level of concern even on her part.  Out of the gates, the ER doctor indicated that this could be an enlarged thymus gland, which is located behind your sternum and between your lungs.  I was half listening as she explained that the thymus, unlike most organs, is largest when one reaches puberty and then starts to shrink and ultimately becomes fatty tissue.  As a result, if it was in fact enlarged, it could simply be removed.  She indicated she was going to get in touch with the thoracic surgeon on call and have him come check me out.  In the meantime, my blood work came back.  Lenny reviewed the results and nothing stuck out as particularly extraordinary.

I never did see the thoracic surgeon.  In fact, when the ER doctor returned, she explained she had spoken to a few other doctors, including the oncologist on call, and it seemed most appropriate — in the first instance — for me to have a CAT-scan and biopsy on the grapefruit in my chest.   The CAT-scan was next and revealed two spots in my stomach and fluid in my lung, which had been collapsed by the grapefruit causing my diaphragm to be pushed all the way up my side. [This finally explained why I was having trouble running and could not complete a 45 minute spin class on the Peloton bike that I recently bought and barely used because of frustration.]  The biopsy, however, would not happen until first thing in the morning.  But since they were concerned about my breathing and wanted me to see various specialists, I was admitted to the hospital and led to a room upstairs.

Lenny headed out at this point as he needed to get back to Philly.  Helene was home with the boys.  Jen and I checked into a private room after paying an extra $170 to ensure no roommate.  In what seemed like moments later, my brother was there.  He relieved Jen for a bit and brought with him turkey, cheese, my favorite honey mustard and a few oranges.  I was starving (and he was observing passover and a post Mexico trip diet).  And then Justin, Kim, Jordan, Brad and Julie all came to hang out.  My mother was getting ready to board a flight from Florida to NY.  I was still dodging emails at this point and making a few work calls.  But I was distracted and had a strong sense that something was wrong.  When Jen returned, I was finally able to purchase cable in the room; Jen had my wallet and the hospital would not accept AMEX (which is the only card number I know by heart), so I was out of business until Jen handed over my Mastercard.   I also started making a couple of phone calls to friends to let them know what was going on.  And with each conversation — and there were only a few — the possibilities were becoming more real as I explained what was happening.

No specialists came to see me that afternoon or evening.  In fact there was no activity until the phone in the hospital room rang at about 8 pm.  It was the assigned oncologist from the hospital calling.  He commented that my x-ray and CAT-scan were “very interesting,” and he asked if it was OK if he came to see me to explain why I needed a biopsy.  [A bizarre comment — I thought to myself as he said it — as I had sat in a hospital for 6 hours, with plans to stay over night, solely for the purpose of getting a biopsy the next morning.]  He also said he wanted to examine me, but he did not take my insurance and the cost would be $500 (he suggested the nurse was uncomfortable explaining this to me, hence the reason he called on the phone).  I told him to come over.  He indicated he was going to take a shower after walking around his neighborhood and he would be by the hospital in 30 minutes.

When the oncologist arrived he explained he wanted to examine me first and then “talk.”  Jen asked a question and he quickly said we would talk after he finished examining me.  That pissed me off and I made some offhanded comment about Jen getting to ask whatever question she wants whenever she wants.  [I was definitely too polite and probably should have said for $500 we get to decide the order of things!]  His examination of my entire body was focused on looking for other lymph nodes as it was preferable to avoid a biopsy on the tumor in the middle of my chest if possible.  Fortunate or unfortunate (and at the time it was anyone’s guess), there were no other lymph nodes to test.  With the examination phase complete, the doctor sat in the chair at the end of the bed and said it was time to talk.  I will never forget how the conversation started.  There was no dancing or beating around the bush.   He said flat out that “we are praying for hodgkins lymphoma.”  I don’t really remember anything else he said after that.  And I had no idea what hodgkins lymphoma was all about.  But I knew it was cancer and I knew I just heard a doctor tell me he was praying that I had a certain type of cancer (although this type of cancer is one that is heavily curable).  I was still hoping that someone simply took this grapefruit out of my chest and let me go on my way.  I was supposed to be in court on Monday and had a new case filing that next weekend.  The last thing I remember him saying that night was that he was hopeful he could help treat me.  As soon as he left, Jen and I spent time on the phone with Lenny and Uncle Mike, who tried to relax us after the examination and talk (in that order).  My mind, however, was off to the races.

I slept awful that night and was incredibly uncomfortable.  I also could not eat or drink anything post midnight because of the biopsy.  And the biopsy did not end up happening until 1 pm the next day.  But Jen, Helene and my mom were all there in the hospital for the biopsy and ultimately to take me home.  The biopsy itself was pretty dramatic.  While they numb the area where they literally poke a hole in your chest to take out chunks of the tumor, you are wide awake and witnessing a long needle being shoved into the center of your chest.  And I remember the gun shot clicking sound of the doctor actually snipping at the tumor to get the pieces that needed to go to the lab for testing.  But I liked the doctor and thought he was funny.  Plus he was going bald but had a pony tail.  He asked me what I did for a living; when I told him I was a lawyer, he said he said he was going to be careful not to screw this up!  With the biopsy complete, Jen asked about the timing for the results.  It was suggested that we would hear in 3-5 business days.  I remember thinking to myself that seemed like an eternity.  What what I do for the next week?  Before I could open my mouth, however, Jen of course said that was wholly unacceptable.  And then she went to work like only my Jen can.  We got those results in less than 24 hours.  [I don’t know how she does it, but Jen amazes me every single day.  She is my biggest fan and my advocate.  Without her, I would be lost.]

That Monday night is a blur.  I was in a lot of pain from the biopsy.  My good buddies came over to keep me company, but I was definitely out of it.  Lots of friends had sent food over to the house, which was incredibility appreciated, but I don’t even remember what I ate.  Tuesday morning was a PET-scan back at White Plains Hospital.  It took forever and I could not eat after midnight on Monday yet again.  When it was finally over Jen got a call from the oncologist who suggested that we come to his office in the Bronx at 2 pm that day.  He indicated that he was nearly certain he knew the diagnosis and would have the results from the pathology lab to confirm by the time we arrived at his office.  The oncologist was very helpful in pushing the pathology lab to move quickly, and for that I am thankful.

Jen drove my car.  I rode shotgun and my mom sat in the backseat.   When we pulled off the highway, we went down a side street with a bunch of houses stacked close together and I was confused.  There was no hospital or medical building.  Just stand alone houses.  One such house belonged to my assigned oncologist and I saw his name on a sign in the middle of the lawn.  As we walked inside, I quickly surveyed the surroundings and noticed half a dozen patients.  And they were right out of central casting.  I could swear I saw Gus Fring from Breaking Bad — after his face was blown off — sitting in the waiting room.  They immediately called me into the back to draw blood.  When I returned to the waiting area, all of the patients (including Gus) were gone.  That is when the doctor called us into his office in the back.

I remember the order we sat in (I was in the middle with my mom on my left and Jen on my right).  The doctor’s desk was directly across from us.  Before he said anything, his car alarm went off and one of the assistant’s called him on the phone to make sure he knew to shut it off.  He then talked about doing a bone marrow test on both sides of my back (which he indicated was going to hurt) and asked me directly if he was going to be the doctor that treats me.  I am pretty sure I said politely that I did not know at that point.  It was at that moment that he said I had B-Cell Lymphoma, which is something that he said he treats and has treated many times before.  Jen was typing feverishly on her phone giving real time updates to both her dad and my uncle.  But before he could say anything more, the phone rang.  He made it a point to let us know it was the pathology lab.  And the only thing I remember him saying on the phone was something along the lines of ok/that’s interesting/you don’t say.  I do, however, remember him hanging up the phone and saying to us “erase everything I just said.  You have T-Cell Lymphoblastic Lymphoma.”    Without missing a beat, Jen asked if that was better or worse than what he had previously diagnosed.  His answer: probably not better.  But he too did not miss a beat when he said immediately that this was not a cancer he was familiar with nor treated, and so he advised us it would be best if we gave him 10 minutes to do some research.  He asked me to give some more blood; I stood up completely numb and walked out of the room.  Jen literally collapsed on the floor in his office and cried uncontrollably for the first time in 3 days.  Thankfully my mother was there to help her pull it together.

I gave blood and watched Jen through the window cry on the phone to her father in the front of the house.  We then reassembled back in his office 10 minutes later for the follow-up.  This follow up conversation was also a blur.  I remember saying no when he asked about doing a bone marrow test.  I remember him saying he read there was a 50% survival rate for this type of cancer in adults (and I immediately thought that I win jump balls).  And I remember him suggesting a few doctors names that treat this type of cancer, including my doctor.   By this point, Uncle Mike and Lenny were fast at work getting me in front of the right doctor immediately.   We quickly left the office.  My mom had to drive home.  I rode shotgun (again) and Jen sat in the backseat.  It was a pretty quiet car ride back to Scarsdale.

I am certain that the assigned oncologist is a good man and a good doctor.  And he has successfully treated many patients in the past.  Just like lawyers have different styles and approaches to their practice, doctors likewise maintain different styles and approaches.  I am fortunate that I had the ability and wherewithal to find a doctor that was the right fit for me.  I don’t write any of this to criticize or otherwise insult the assigned oncologist’s approach or handling of me over the course of those couple of days.  I am simply recounting the experience that I had and repeating the things that I heard.  And I truly appreciate his efforts in moving everything along quickly.         

———————————————–

I did not feel great today.  That being said, I am living in the present and appreciating each day even if I feel like crap.  I missed the kids this morning (because I didn’t go to bed until 6 am), and I did not get to see them nearly enough.   But I did watch the first quarter plus of the Cavs game with Jake and got some unbelievable hugs from Brandon before he went to sleep.  And Ryan and I got some time together when Jen dropped him off at home.  I watched him devour a buffalo wing and he helped me organize and sample some Hint Waters.

I corresponded with 2 cancer survivors that friends put me in touch with.  I was also in touch today with a young woman that I met in the hospital a few weeks ago who is fighting cancer as we speak.

I was humbled yet again by outreach from friends and colleagues, all of whom are showing support and offering to help in any way they can.  I received cards in the mail and a show downloaded on an iPad from a friend that I am looking forward to watching.  I had visits from partners (who are friends), friends and other colleagues.  It is great to spend time with people and hear what is going on.

So no complaints!

 

6 thoughts on “(Mis)Diagnosed”

  1. Josh, thinking about you today and every morning. B+ It is not a grade. It is an attutude. You have this one. Your support from family and friends is overwhelming and wonderful. Safe travels this weekend. Hope to see at the beach.

    Like

  2. Josh, I’m not sure if it’s helpful for me to share this, but I feel like I can relate to what you have gone through and are going through now. I have no experience with being in a room when a cancer diagnosis is given. But, I do have experience with being given a life-altering diagnosis that completely changes everything in seconds. When our oldest child was 4 weeks old, she was diagnosed with an extremely rare (1 in 25,000) chromosomal abnormality called Smith-Magenis Syndrome. The geneticist told us not to look it up because the features were that awful. I remember reacting just as your wife, Jen did, collapsing on the floor in tears. It was like my whole world went black. The geneticist did not handle our response well at all. She was dry, unsympathetic, disconnected. I really disliked her for it. Looking back, I realize that doctors have different self-protective measures they take. Most don’t have a great bedside manner. Which is awful because they are at ground zero with these things. There should be full courses in med school – maybe there are – but, it might not be something that can be learned in a classroom.
    Regardless, what I want to tell you is, that we did look it up (obviously) and were devastated by what the research, statistics and every word about the disorder said. I’ve lived for years bracing myself for the absolute worst possible scenario. And you know what? She’s 10 years old now and we have a wonderful life with her and our two boys. She never read those statistics. She wrote her own story. Just like you are doing now.

    Like

    1. Thank you so much sharing. I am so happy to hear that all is well with your daughter. Amazing.

      I have also come to realize, through both your experience and mine, that people simply react or provide information differently. There does not seem to be a right or wrong way to do it, although we obviously all have our preference for the way in which information that is personal gets delivered to us. But again, that does not necesssarily mean the person delivering the information did anything wrong. And that is what I have come to peace with. My sense is you have as well. It is certainly not the “beside manner” that I would exhibit, but to each their own.

      Thanks again for sharing this. It is very helpful in putting things in perspective.

      By the way, I try to stay away from statistics too. The sample set is too large and we are not statistics.

      Like

  3. I read your posts every morning and feel like they could have been written by Marc word for word – this one and the “Get a Physical” post in particular. Your experiences are eerily similar (though he does in fact have B-cell, not T-cell). Thank you for putting your thoughts and experiences into words on paper (or the internet since we are in the 21st century). It’s great hearing how well you are doing, and cathartic for me and I’m sure many others. You are in my thoughts daily. Keep crushing it!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s