Monday, November 12, 2012

The backstory

My husband spent most of the first quarter of the year having problems with his left arm. Eventually he was diagnosed with a pinched ulnar nerve. We decided he'd have surgery in October of this year (10/8 to be exact). The arm issue was unusual and particularly severe and he had a ulnar nerve transposition. This was a pretty major surgery, it involved cutting open the bicep to protect the ulnar nerve. We had also noticed back pain, which we attributed to the arm, for pretty much the whole year.

After the arm surgery, the back pain didnt really go away. Suddenly my husband was complaining he could not feel the muscles of his abdomen. He also was complaining of pain in his RIGHT arm. We assumed this was another pinched nerve. He began to walk a little funny. I assumed he was just trying to compensate for his arm by walking a little "off" to alleviate the pain. His neurologist marked that there were no issues with the feeling in his legs when my husband went in to complain about his abdomen being numb. This wasnt true- he was already beginning to have issues with leg weakness. That was on 10/25, I believe. Between 10/25-11/1, he fell in our home three times.

We went out trick or treating with out kids on 10/31. This was the last time my husband walked even remotely "normally".

Within two days I had convinced him that he MUST go to his neurologist on Monday, he agreed. By Saturday, he literally could not walk, I had to help him into the van and lift his legs inside. He and I spent almost 4 hours to be seen, a ridiculously long time. When we went back, we discussed his severe neck/back pain, inability to walk, etc. He told the Dr he had been diagnosed with Hodgkins in 2001 @ the age of 18. They decided to do a CT Scan and a couple of MRI's. I should note here that despite spending nearly 6 months being treated by a neurologist, and having surgery performed by an orthopedic surgeon, none of them EVER sent him for an XRAY, CT or MRI of his neck, back, or arm. Even when he went in and had a numb abdomen (clearly not a good sign). The ER dr assured me he would be in testing for quite a few hours for scans, so I went home to pack an overnight bag for my kids & drop it off with my Mother in Law. I also charged our phones, grabbed some snacks and headed back over after a couple of hours. He was still doing testing. I do remember the ER nurse coming to see me and telling me that "there were some abnormalities in one of the MRI's". I'll never know why he told me this- because he knew, and felt guilty....because he wanted me to be prepared...I just dont know. All I do remember was them bringing back my husband, and us both falling asleep for a short period of time, maybe an hour. Suddenly the ER Dr was back and said "We need to talk." My husband remarked "That doesnt sound good..." and the ER Dr replied "Its not. You have a tumor in your spinal canal. There is also a second tumor outside of the spine."

I remember putting my hands over my face and suddenly feeling like I was suffocating. The ER Dr kept talking...I dont even totally remember what he was saying. I just remember trying to breathe, feeling like I wanted to die, feeling like I would explode, feeling like I was in a nightmare that I was struggling to wake up from. I do remember him then saying "The tumor is compressing your spinal cord, that's the reason behind your paralysis. You'll have to be admitted right away. We'll send you either to Shreveport or New Orleans, because you'll need emergency surgery to take the pressure off the spinal cord before the paralysis gets worse or becomes permanent."

That is the moment I completely lost it. I became THAT woman in the ER- the one sobbing and screaming hysterically, gasping for air like a fish out of water. I remember the ER dr saying "I'll give you a minute" and walking out with the nurse. My husband called me over (he was crying as well, but silently) and I laid on his chest and wailed and wailed and wailed. I dont remember much after that except calling my mom around 4 am, and crying hysterically to her. I called my husband's mom also, who started crying on the phone. My mom was there at the ER within 20 mintes to meet me...I dont really remember what happened until she got therem which was me breaking down again. She had brought my aunt too...all my aunt could do was rub my back while my mom kept me from falling to the ground.

Knowing John's history with cancer, of course we assumed the worst- we always knew the chances he would get cancer again were higher than that of the average person. Never would I have imagined that the possible returning cancer in his spine. And as of this moment, we dont actually know the prognosis yet- benign or malignant. So far the consensus seems to be there is a good chance its benign, but that doesnt mean it is, nor does it mean no treatment even if it is benign. We simply DONT know what will happen yet. More posts on that soon. He was diagnosed in the early morning hours of 11/3/12, had risky microsurgery to remove the spinal canal tumor on 11/6/12 and here we have sat, @ LSU Shreveport ever since.

 Waiting to hear what is going on. Waiting to hear just how much our lives are going to change. Trying to find a new normal. Trying to keep our minds positive, even though its next to impossible.

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