Thursday, May 16, 2013

Memories that leave you feeling broken

I was driving to work this morning, and my mind wandered to the place it usually does- thinking about John in some capacity.  Sometimes I think about things he did or said, or our life together, or how much I miss him, or I think about when he was sick....just kind of wherever my mind wanders.

Today I was thinking about how its been over a year since he first started complaining about his arm hurting and went to see the neurologist.  The whole year or so played out in my head, all the way to the point at which he died.  And while I know all of this is VERY real, a small voice in my head said in disbelief "There's no way that actually happened."  It all still feels like some very weird dream.  But nearly immediately after that passed through my mind, a bigger voice in my head immediately reminded me that OH YES, it had indeed happened and yes, my husband suffered for so long with a misdiagnosis and yes, once he was diagnosed it was too late (although we didn't know that at first...) and he did die and he isn't ever coming back.  Cue the waterworks and the feeling of my heart sinking in my chest.

I remember almost everything all too well...

I remember when he started to complain of arm pain & he went to see the Dr after months of prodding from me because the pain wasn't going away, all of the Dr appointments and the very costly tests (none of which were the one test he truly needed...he could've been correctly diagnosed with a simple MRI for the complaint of the neck and back pain that were as bad as the pain in his arm), the couple of month preceding the surgery on his arm for his "pinched ulnar nerve" (aka the misdiagnosis) where the pain was so bad that he had made the decision to have the surgery and was on so much pain medication I don't know how he functioned -or even worse, when he'd go to work without pain meds and suffer through the day and come home and be in so much pain he would basically take his meds and pass out, leaving me to handle everything...I felt so resentful at the time...but now I feel so very very guilty for feeling that way...I know I didn't know and I know its not my fault...but it doesn't stop the guilt.

Then I think about how the pain didn't stop with the surgery and how it was rapidly followed by new problems that I wanted to ignore so bad I never thought about how worrisome they were.

I don't know why that didn't immediately scream to me something was very, very wrong...and if I thought I felt guilty about the fact that it never dawned on me that something was off before this point, the guilt from not realizing something was VERY wrong after his surgery is enough to make you feel like you're being eaten alive from the inside by that guilt.

My mind frequently replays the timeline of the (nearly) 4 weeks from his surgery to his diagnosis.  It goes over every little detail of those 26 days, like some never ending movie reel I'm being forced to watch.  From the surgery day itself where I watched him writhe in pain in the waiting room while he muttered his annoyance over the amount of time it was taking for them to call him back, and we both muttered our annoyances to each other about this obnoxious family also in the waiting room with us; to the pajama pants he was wearing- although for the life of me I cant remember what shirt he was wearing.  I think I remember the pj pants so well because they were a favorite pair of his that I had bought years earlier, and he had gotten some sort of adhesive on them when fixing something in the house one day (weeks or months earlier) and I remember questioning him on why he had chosen THAT pair of pants, as I thought they looked dirty with the dried adhesive on them.  I'm not sure why that bothered me so much considering that we were there for him to have surgery- and who knew us there anyway? But I just kept starting at that dried adhesive on his pants, annoyed by it.

I remember feeling so relieved when I finally got to see him when he had been prepped and medicated and he was finally, for the first time in so long, NOT in extreme pain.  He was being so jovial and sweet and goofy because of the meds- I remember he kept asking everyone who was working on him if they liked cats, then would go on to tell them stories about our cat.  I kept having to whisper in his ear "John, I don't think they care too much about the cat, babe..." after about the 5th person he had blabbered on and on about our cat to.

He kept looking over at me and saying "Give me kisses, baby..." and puckering up for me to lean over and kiss him, or he would look over at me and tell me how much he loved me.  Thinking of those 30 minutes actually make me smile a little.  I hadn't seem him so comfortable in so long- it was a huge relief.  I had hoped that he would be returning to his fun, happy self after the surgery and after healing- I had so much optimism about that. 

He was wheeled off eventually and I went back to the waiting room.  The surgery took longer than they told me it would and then when the orthopedic surgeon came to see me, I remember him explaining to me that John had all of this scar tissue in his arm and that the nerve had managed to "break free" or was "hyper mobile" and that it moving back and forth had caused all of this scarring of tissue inside his arm and that he had to do a full ulnar nerve transposition (they cut open his bicep and buried the nerve under muscle).  Again- why this news didn't alert me to the idea that something was still OFF I will never know.

I guess I just believed the diagnosis (why wouldn't I have?? I'm not a Dr.) and I just really wanted to believe things would be OK after the surgery.

But they weren't.  John's pain had lessened a little immediately following the surgery but then the pain took a quick upswing and suddenly he was complaining about how much pain he was having in his back as well.  This had happened before- neck pain also- but it seemed to be so severe considering he now had completed the surgery, and wasn't it supposed to fix this?? I thought "Maybe it just takes a little time...they had to cut open his bicep, surely that is contributing to the pain."  Again I question myself- why didn't I realize something was wrong?

Can you tell that I ask myself this question a million times a day?  I know the answer is that I really COULDN'T have known, and that I trusted the medical professionals (why wouldn't I, right?) and honestly- to this day- I don't know that I would've ever guessed it was cancer.  I don't know that if it had occurred to me that something was so wrong that I would've guessed cancer- and especially the TYPE of cancer, because it was so rare and because of where it was- because to this day I still say I would've been less shocked to be hit in the face with a brick than to hear what they found when I brought him into the ER on 11/3.

Back to the weeks before his diagnosis- I remember 8 days after his surgery we went to see a band John had been wanting to see for quite some time.  I questioned him on if he really thought he could hold up for that and he said 8 days post surgery or not, he was going.  So we did.  I drove us to New Orleans and we watched the show.  John was still in a lot of pain but he toughed it out.  We both really enjoyed that show and I know I will cherish that night out with him forever.  It was one of the last nights we had together, just us, enjoying our time with each other and the music we loved.

Shortly after that John decided to quit pain meds cold turkey.  He had been on them so long that we were genuinely concerned he would develop more than just a high tolerance for them and I had expressed many times that after the hellish 6 months we had been through, the LAST thing I could deal with was an opioid addiction. I hadn't asked him to go cold turkey but he thought it would be better.  Those were some rough days.  I chalked it up to some level of withdrawl from the pain meds (at this point he had spent about 6 months on them, and at a pretty high dose by the time he had surgery) even though now I know it was probably mostly the tumor.  I'm sure there was some withdrawl also, and I'm sure it was extremely unpleasant for him.  He was hurting, he had very little tolerance for anything, he was angry (probably because of how much he was hurting- who could blame him??  By that point even I had stopped getting frustrated with him over the pain because while J used to have some hypochondriac tendencies, no one could mistake the pain he was in at that point and I was sure that suddenly going off meds did not help the situation.

Then there was the day I remember him first complaining about how his torso felt numb.  I brushed it off at first.  They had done a more complicated surgery than they thought he would have, and I assumed it was related to that.  I told him it probably was nothing, but he was concerned.  He kept saying "No.  Its not normal."  Of course, because of his semi hypochondriac tendencies I brushed it off. After another week had gone by and he now complained of not only numbness in his abdomen, but the issues with being able to control his torso/trunk properly.  Again, I wanted to brush it off as nothing.  He went to see his orthopedic surgeon who basically told him "Don't know what to tell you...go see your neurologist."  A few more days went by and the problem had progressed.  He also confessed to me that he had fallen at least 3 times.  I still tried not to be overly concerned (I don't know why...that seems like such a red flag, right?? I guess my mind was just in such denial over there being something TRULY wrong...I don't know.) but told him to go see his neurologist.

I remember getting the text the day he went to see neurologist.  The issues had progressed further and he now had a slightly off-putting gait when he walked. He could not feel his abdomen and had even lessened trunk control.  I fully expected to get a text telling me how he was being sent for an MRI because I remember thinking in my head (upon getting the text that he was going to the neuro) "Awesome, another medical bill to pay for..." (HA.  What I wouldn't give for those to be the extent of my medical bills now!)  Yet I didn't hear back from him that day.  When I got home, I found him, looking so...defeated.  I asked "What happened?  Did you have an MRI?"  His reply was "No.  I told the Dr and he suggested I try a few rounds of steroids and see how it goes."

Again...I guess I just so did not want to believe anything was seriously wrong, I wouldn't even let it cross my mind.  I would just think over and over "This is because of the pinched nerve and the surgery.  Things will get better."

But things did not get better.

We took the kids Trick or Treating on Halloween.  It was a Wednesday.  John's gait was still slightly off as we walked through the neighborhood, but he was doing OK. We even joked a little bit about him looking a little like Frankenstein with his walk...we kept it as a lighthearted joke, because I still never really felt something was truly wrong.  He had a few drinks, we had a few friends with us, we had a good time.

I wish I had known this would be one of the last "normal" family times we would've had together.

By Thursday his gait and other issues had escalated.  But I was convinced he was walking the way he was in an attempt to over compensate for the pain in his back.  I kept asking him why he was walking like that, and he INSISTED he couldn't control it.  I feel terrible about it now, but I honestly thought he was compensating for the pain in his back and either didn't realize it or didn't want to admit he was doing it on purpose.

By the time he got home on Friday night from work, it was even worse.  I remember getting angry with him and tell him to STOP walking like that.  He got angry back at me and told me to cut it out, that he was NOT doing this on purpose and had no control over it.  He mentioned he had been trying to research what the issue could be and was worried he might have MS.  I didn't really shrug that off bc in 2008 he was having problems with severe headaches and during an MRI they did find 2 small lesions in his brain that couldn't be explained.  They weren't ever seen again but once he said he had been reading about it, I began to get concerned.  We were sitting down and I told him "If you really cant control these things, you will go to the Dr first thing on Monday and DEMAND to be seen and DEMAND an MRI.  As soon as his office opens, go in and DEMAND a scan."  Meanwhile I spent the rest of the night reading up on MS and began to wonder if he indeed DID have that. 

That is when I began to worry- REALLY worry.

On Saturday, the gait issues were as bad or worse.  I just wanted the weekend to hurry up so he could go see his neuro.  At that point I was even going to drive there with him Monday in case the Dr tried to brush it off....I KNEW at this point something was not OK and I didn't think it had anything to do with his arm.  In fact, I was also thinking at this point that MS was a very real possibility.  It scared me, but I thought "We can deal with that."

Then, late in the day on Saturday, John had gone to take a shower.  He was having serious mobility issues by then.  I still say to this day I wish I had taped him while he would walk.  I had never seen anything like this.  I don't know that I ever will again.  I don't think I could replicate his very odd movements, the awkwardness and jerkiness of movement...I cant even really quite think of the word to describe how ODD it looked.  I was counting down the hours until we could get him in for a scan on Monday.  I went to do some laundry and when I went back into our bedroom, I found John lying on our bed in a weird position, crying.  This was probably about 4 or 5 PM.

My husband WAS NOT a crier. 

I was immediately disturbed.  "What's wrong?????" I asked, rushing over to him.  He continued to cry and said "I cant walk anymore.  I basically had to drag myself from the shower to the bed."  Additionally he complained of being in a LOT of pain.  Panic set in with me.  I threw his phone at him and told him to call his mother to tell her we were bringing the kids and I was taking him to the ER.  My husband was not one to go to the ER for no reason, either.  He didn't even bother to resist.  He called his mother who told him yes, he immediately needed to be seen at an ER- we could not wait until Monday.  I helped him put on clothing and left him on the bed and told him NOT to try and get up.  I rushed around the house, packing a bag for the kids as I didn't know how long we'd been at the ER. 

I went back to our room and told him "Look.  I'm going to help you get into the car before we put the kids in.  You HAVE to hold it together while they are in the car.  I know you are hurting, I know we're worried, but we're going to tell them you're just going to see the Dr today and we'll be back later and they are going to visit your mom for awhile. I don't want them to freak out.  You HAVE to hold it together, OK?"  He agreed.

Somehow, I managed to help this nearly 300 lb, 6'3 man into my minivan.  Considering he could barely move the lower half of the body (I mean barely...he was not joking when he said he could not walk.  I basically held him up and dragged him while he tried to drag his legs along too. You know how they said some people suddenly have a lot more strength when something happens- I think that is what happened that day) it took a few minutes.  We got him into the seat, I buckled him up, went inside and grabbed the kids bag and calmly told them Daddy needed to go see the Dr and told them to go get into the car.  He had seen a Dr so much in the past 7+ months that they didn't think it was all that unusual. 

We dropped them off and went to the ER where I had to go get a wheelchair and again was able to somehow get him out of the car.  It was probably somewhere around 7 PM by then.  It took them 4 hours to see us.  I couldn't believe it.  How could they make us wait 4 hours for a case of sudden onset paralysis, especially considering all of the other issues he'd been having for 7 months at this point.  I really really believed that he would be diagnosed with MS.  I knew he did too.  Or I think he did.  He never mentioned he thought this might be cancer.  Somehow it NEVER crossed my mind that it would be either.

When they finally took him back and we saw the Dr, he was begging for pain meds.  I knew he had worked hard to get off of them following the surgery but he was in a lot of pain at this point.  We ran through the past 7 months with the Dr who said he would be ordering MRI and CT scans of his head and basically his whole spine.  They said the scans would take a few hours.  At this point, I had not eaten, I was exhausted, and I hadn't brought a charger for my phone, which was about to die.  The ER physician suggested I go home for about 2-3 hours because of how long the scans would take.  I agreed, kissed John, and left.  I called his mom and updated her and asked her to keep the kids overnight without alerting them to what was going on.

I went home and charged my phone.  I called my mom to let her know what was going on.  She told me to call her if I needed her at all, for anything.  I promised I would. I couldn't eat.  I thought about trying to sleep but was afraid I wouldn't wake up, and also I was a wreck and don't think I could've slept anyway.  I stared at the TV for a few hours, not really watching the shows (I cant remember for the life of me one single show I watched during those few hours) & checking the time constantly.  Finally after about 2.5 hours I drove back to the hospital.  I assumed he would be done soon, and we'd get results and I really still did believe we would be looking at something like MS as a diagnosis or that maybe there would be some other explanation that would not be a big deal...that it would be something we could treat and live with, or that it was actually a result of the surgery he recently had. Cancer still never crossed my mind.

John wasn't back when I returned to the ER.  The nurse came to see me in the ER room he had been in and told me he'd probably be back within an hour and the results would take another hour.  At this point, I dozed off a little.  I remember being woken up by the male nurse who said they would be bringing back John in just a few moments.  I don't know if he was supposed to say anything to me (I don't think he was) but maybe because he knew what was going on and he felt such pity for me, he did tell me "Listen, there was something abnormal on the scans..."  EVEN THEN, cancer did not cross my mind.  I still thought MS, or something else, but honestly...somehow...I never thought cancer.  I dozed back off for a few minutes and then they rolled John back into the ER room I was waiting in.  He was pretty out of it from the meds.  We spoke briefly, he said he was in less pain now, and then we both fell asleep after the nurse said the Dr would be back in about an hour.

And then...the Dr came in- he woke us up.  I remember it being around 3 or 4 AM.

I remember those words so clearly.  "So, we have the results.  We need to talk..."

John was on the ER gurney at a slightly inclined position.  I was sitting on the other side of the room in a chair.  From the gurney, John said "That doesn't sound good..." and began to look concerned.

And then the words I will never forget...

"Well, its not.  The scans show you have a tumor on the outside of your spine, around the C5/C6 vertebrae.  And its grown into your spinal canal and compressed your spinal cord...that is what is causing his numbness and paralysis, as the cord is highly compressed right now."

I absolutely LOST MY SHIT at this point.  I don't think I have ever had such a loud, unstable reaction/panic attack to any bad news I've ever gotten. I wasn't just crying or sobbing- I was literally having an obnoxiously loud sobbing breakdown inside of the ER room we were in, shaking and rocking back and forth and moaning "No, no, no, no, nononononono.  This cant be happening!!!" and back to wailing.  I freaked the ER Dr out so badly he said "Let me give you a minute...I'll be back."  John was crying too, but silently.  He said "Come over here."  Somehow I managed to walk over to him where I fell onto his chest and sobbed and sobbed and sobbed.

The ER Dr came back and told us that John would be seen in a few hours by a neurosurgeon, but that his case was too complicated for anyone in our city to handle and we'd be moved that same day to LSU Shreveport where John would need surgery within 24 hours.

I excused myself at this point and went outside to call my mom.  Cue breakdown #2- I don't think she could barely understand me past "John has cancer.  I need you."  At that point I know I took some meds because my anxiety was through the roof (to say the least) and I remember calling John's mom to tell her, and then I remember my mom showing up and me sobbing and sobbing and sobbing in the ER waiting room against her for the longest time.  I guess my meds kicked in after that because everything went pretty fuzzy for awhile. I know after a couple of hours my mom went back home (I told her to, as I knew we'd be leaving for Shreveport as soon as we saw the neurosurgeon and were discharged/transferred. I know I fell asleep again because then I remember the neurosurgeon coming in and waking me up by yelling at the ER physician because apparently the neuro had told him to move John to Shreveport right after the scans came back (which I think was around 4 AM) due to the seriousness of the situation.  I was told John would be getting prepped to be moved to Shreveport and I should go home and pack and drive up there because we should expect to be up there for at least a week or so and that he would be moved that day, have more tests run, and then have surgery the following day (a Monday).

And so that is what happened.  I went home and walked around my house for what seemed like hours, unable to make my brain function enough to determine what I should pack.  In the end I just tossed a ton of clothes into two bags and got in the car and drove up there.  John was moved by ambulance and spent the day having more scans and tests run.  I was so unable to deal with what my life had just tailspinned into that I don't remember a lot about that day except that I slept for most of it.

Then the next day, John had a major surgery to remove the portion of the tumor in his spinal canal so it could be sent to pathology and tested for whether it would be malignant or benign.  They could not remove the larger portion at that time and did not want to (as it was not only against his spine, but also wrapped into the nerve bundles of his brachial plexus) so it remained for the time being.

As awful and heartbreaking all of the above turns out it really was just the beginning of the nightmare.


  1. I am sorry Crystal. I think about you all time. I really mean that.

  2. Thank you Natasha. That means so much to me, and I really do mean that too.