So I didn't realize I was a survivor.  Sometimes I still don't.  After blogging this morning about my career as a music minister, it got me thinking. There were things that turned sour there as well, and I am in my 4th year since quitting a job that I loved and feeling betrayed by a priest who looked at me as only doing a "job" and not a ministry.  I don't feel comfortable going into details, but there comes a point in your life when you cannot abide an attack on your faith or your whole being and this is what happened.  It was at a low point in my life and deflated my spirit.  And that was just one year before I was diagnosed with cancer.  It is much more recent then my back and neck problems, but it seems important to add it.  God has been good to me, and although it hurts that I cannot be at church playing my prayers and encouraging others to sing their prayers as well , I believe it has happened for some bigger reason then myself.  I just need to wait and find out.
          
     So I will continue my story with the psychological test I had to undergo before I could have the surgery that would help alleviate my back and leg pain; the implantation of a neuro-stimulator.
I had a follow up appt. with Dr. Krasner about a week after taking the test.  She put my worries to rest when she said I didn't even come close to "failing" it.  She said although I had some depression, she explained that when you have chronic pain, it is a common occurrence.  She was very reassuring.  In fact she cleared me.  I was now free to meet with Dr. Plunkett again.  I decided that it would be a good idea to continue seeing Dr. Krasner because I found that I had so much anger bottled up inside.  I think I was just mad at the world.  But I blamed many things on Dan, and attacked his family because I felt that he was choosing them before me.  I don't think it so much anymore, but he is not a touchy feely kind of guy, and it is hard for him to show me affection and talk to me.  Just talking would have been a help, but we seemed to have gotten to a place where I was complaining constantly and I knew it, but I just wanted him to talk to me.  He didn't.  As I talked things out with Dr. Krasner I found that it is not all that uncommon for caregivers to learn this behavior of doing what needs to be done, but not being able to fix things, they tend to stop communicating a meaningful way.
     But I was hopeful.  I would have the surgery and I would feel better.  It wouldn't fix anything, but it was a start.  I made an appointment to meet with Dr. Plunkett again.
     I was a bit timid when Dan and I arrived for the consultation.  Our first meeting hadn't gone very well, and I still wasn't sure I liked him, but I did feel confident that he was a good neurosurgeon.  The visit went well.  He scheduled the surgery for a few weeks later.  He went over with me the specifics, like that I would be awake for the surgery even though I wouldn't feel any pain.  I needed to be awake so they could place the wire exactly where my pain was.  This would be a trial surgery, and the wires would be outside in a small incision.  I would be given a handheld "remote" that I could control how strong or weak the electrical stimulator would feel.  I would be able to adjust the frequency and strength of the signal.  He informed of the  seriousness of major surgery, especially near the spine.  The wire would be placed in the hollow space between the spinal cord and the dura, a membrane that encloses the spinal cord with spinal fluid.  There were the usual risks he had to tell me about, possible paralysis, spinal fluid leaks, and even death.  Very small percentages of these, but he had to tell me about them.

     The day of the surgery I remember feeling upbeat.  The anesthesiologist  promised me that I wouldn't be sick after the surgery, a problem I had with my previous surgeries.  And although I don't remember the specifics, I know he explained to me how I would be in this "twilight sleep", so that I could converse with the surgeon.  I didn't understand it, but I soon found out what it meant.  I remember waking, sort of, to find myself laying face down with oxygen on my face, and the tubing hurting my cheek.  Odd.  Dr. Plunkett was asking me if I could feel the tingling feeling.  It was amazing.  I could feel it, and as he worked to place the wire in the right spot I remember laughing when he asked if I could feel it in my "buttock".  I actually started laughing and was told to lay still.  A very strange sensation.  To explain how it felt, I used the analogy that it felt like the vibrations from an electric razor along the path of the pain.  It somehow tricked my brain into believing that the stimulation blocked the pain.  All I knew when I woke up in recovery that I  was amazed when the Medtronic "salesman" was at the side of the bed telling me he was going to turn the stimulator on.  It felt wonderful.  I cannot, to this day describe the feeling.  I was elated, excited, relieved.  Dr. Plunkett had come in as well and told me that I might experience a headache because of the puncture into the spinal canal.  I didn't care.
     I don't remember telling Dan about it, but I do remember later in the afternoon while Ben and Dan were visiting, I did get a headache.  The nurses gave me something for it and I think I fell asleep until the following morning.
     When I was told that even though I had a headache I should try and walk around testing the stimulator.  An intern came in and told me to try and start walking around as soon as possible.  As soon as she left the room, I got out of bed.  I noticed a sizable spot of watery blood where I had been laying.  I went out of the room to ask a nurse about.  She stopped the intern and told her.  She came with me into the room.  When she saw the spot she told me to lay down immediately as she was going to get Dr. Plunkett.  Something was wrong.  I knew that there was an open incision where the wire was, so I wasn't sure what was going on.  When he came in he said I needed to be rushed back into surgery, as it looked like I was leaking spinal fluid.  A lot of it.  I was terrified.  I called Dan right away.  I needed to see him before they wheeled me away.  I remember him getting there just moments before Dr. Plunkett himself wheeled me into the operating room.  I really don't remember much else.
     When  I woke up in recovery I was told that I had had a "brain sag".  It meant that the spinal fluid that had leaked out had caused the  brain(which floats in the spinal fluid) actually sag.  I felt strange.  I had a massive headache, and I was foggy.  Dr. Plunkett informed me that they had to remove the wire, and the leak was sealed with packing.  I should start to feel better.  My brain had suffered a trauma and it might take a while for things to come around.  It was a strange sensation, and the headache didn't seem to go away despite the pain meds I was given.
    In all I spent over 10 days in the hospital for a trial which should have been an overnight stay.  Because the  headache didn't seem to get any better, the doctor did several procedures until finally I was well enough to go home.  I had talked with Dr. Plunkett, who I now felt much more warmly about and was adamant that I wanted the device because it had worked.  He told me I would have to wait at least 6 weeks and then we would see.
     I know my mom tried to talk me out of it.  It was a serious issue, the brain sag, and although it took many weeks for me finally be free of the fog I had been in, I knew I wanted the relief I had briefly felt.  Dan tried to talk me out of it. a lot of people did.  But it did no good.  I wanted the surgery.
     And I got it, finally.  God had watched over me and saw that I healed, and gave me the thing I had most wanted, relief from the never ending pain.  I returned to work rejuvenated.  I started reconnecting with friends.  People noticed the difference.  They told me they could see it in my face.  I was happy.  I still had episodes when I would do too much and still have pain, but I had medications for those times.  But for the most part, things returned to normal, or what was my normal.
      Until one day, I lay my head on the table.  I had a headache.
      
      This may seem a never ending drama.  It was.  It seems long to me, and I lived it.  As I look at things now I see that while there has been much tumult in my life, there have been moments of peace.  I will continue this journey I am on knowing that God has given me peace when I've needed it, even if it doesn't always feel like it.  I am truly blessed.
I wish you peace.
Barb