The day before we headed to Toronto for my MRI appointment, I had filled my day with friends. Naomi and Judy had come to check in an me and as a way to keep up with our group. We had a fun couple of hours together. Each of us was beat and decided should end our visit for prospective naps. With a belly full of caesar salad and chocolate chip cookies, I fell fast asleep in the chair they left me in. What a wonderful nap! I have yet to hear the comments on theirs.

Late in the afternoon, Barry having finished work, for the day joined me in the kitchen. We were at a loss for dinner ideas. He decided on some leftovers and I held out for something better. Little did I know that something better was about to ring our doorbell.

Teri, a friend Barry met through work and is now a good friend to both of us,was standing holding a basket of fresh muffins! She not only came at a perfect time for some girl talk, while Barry headed out for a band practice; she was holding my dinner! Banana chocolate chip muffins are a favourite of mine. We had a lovely evening and got caught up on all he news and she even offered to administer my medication to my foot.

Those visits along with family phone calls keep be busy so I had little time to focus on the up coming MRI.

We packed our bags and headed out the next day. The drive is difficult but doable. We had a lovely dinner with our girl Jerri,and then they wheeled me to the hospital. It was the first time I had an MRI at Princess Margaret and they were all very nice. I used all of my courage to not be asked to be taken out. I did it! And now I'm free.

We waited for Jerri to finish work and now the three of us are on our way to Ottawa. Under any other circumstances I wouldn't be driving anywhere but I see it as a family holiday for us in Ottawa. There's a baby shower for a new Parson's Baby and we all want to be there to celebrate.

Meghan has left Sudbury, and is headed to Ottawa. Her and Jerri get to spend the weekend with their lifelong friends, Keara and Molly. It will be a fun summer weekend for all of us.

The trouble is leaving a city the size of Toronto on a long weekend equals chaos. Meg left Sudbury around the same time as us and has long since arrived.

It's raining and there's lots of traffic and as always there are crazies on the road. I'm lying in the back seat surrounded with pillows. If I didn't need to be there so badly this weekend, this is something I would never do.

Family and friends are what we all need right now so if it means a long uncomfortable drive to get it. That's what we will do.

Once again I have that bittersweet feeling of knowing when the surgery will take place. I have an MRI, in Toronto on Thursday of this week. Once that was confirmed, the rest of the planning was happening behind the scenes at Dr Fehling's office. The pre-admit appointment, x-rays, and CT scan, along with doctors appointments will happen during a very long day on August 11th. 

The surgery will take place on August 26th. 

I have such mixed feelings about the date. I wanted the surgery to be done soon, knowing the risk I have, and as I have come to learn, the waiting can be very hard on everyone. Knowing it is so soon, makes me feel as though I won't have caught my breath from this surgery, when I will be right back there again. There are positives though, a short wait, fall to recover without snow, and I get most of August to sit on my deck. 

It has been an overwhelming week for our family. Our resources have been exhausted in many ways from having spent five weeks in the hospital. Going back to neighbours and friends asking for a helping hand with our home, the dog and so on is difficult. People have been so kind. We are looking for solutions to all of the same things we did a couple of months ago. All of those assessments, and the equipment we rented, the plans we made, are all being redone. It's a lot to stomach. 

All of that is happening and all the while there's a fear running deep within all of us. It is the "what if?"  What if I come out of this surgery worse off than this one. What if the pain doesn't resolve? What if I can't walk? What if the autonomic disreflexia isn't controllable? 

We just lived all of that so to say think positive or don't worry about it doesn't really take those images away. 

We had put it all behind us, had worked very hard and I am walking. I am able to walk around our house without a walker, or cane. There are times, like the middle of the night when I need assistance, but for the most part I am independent. Outside I still need a cane to get to and from the car, and a walker for everything else. I have walked or exercised everyday since I left ICU. Most days I have not wanted to but once I got out there it felt good to be doing it. 

I know for sure that despite having had a surgery only three months previous, I will be going into this surgery stronger than the last. The risks are higher with this surgery, for both infection and the resiliency of the spinal cord. We know that going in so everyone will be especially cautious throughout. I have absolute faith in my neurosurgeon. If it weren't for him, I wouldn't be walking today. If I wasn't already confident in him, I recently say this written about him: 

Dr. Michael Fehlings is Head of Krembil Neuroscience Centre’s Spine Program at UHN and a Neurosurgeon in KNC’s Division of Neurosurgery, and Vice Chair-Research, Department of Surgery, Faculty of Medicine, University of Toronto and a Professor of Neurosurgery at the University of Toronto, a Senior Scientist at the McEwen Centre for Regenerative Medicine and Senior Scientist, Toronto Western Research Institute and holds the Gerry and Tootsie Halbert Chair in Neural Repair and Regeneration.   As head of the Spinal Program, Dr. Fehlings leads Canada’s largest team of spine surgeons, responsible for more than 900 operations and over 4000 outpatient visits annually.

None of us know what we will face in our lifetime, or what our children and friends will have to face. Not knowing what is coming leads one to believe you cannot prepare for it. That's not true, I think I have been preparing for this my whole adult life. I am resilient for sure, but that is a decision I make every day. Resiliency is built over time, but it is a combination of many things. Here are my thoughts on what it contains: 

Being forgiving, allows us to move on with strong hearts. 

I love the saying, forgiveness means understanding that the past cannot be changed. Staying in the past, doesn't allow you to live fully in the future, forgive and move on.

Being open allows us new ideas and experiences. Flexibility is what makes life so challenging yet interesting, if you are open and flexible, things come to you that never would have otherwise. 

Being confident allows you to move forward while your feet feel stuck in quick sand. Confidence is also a decision. It is hope and faith rolled into one. I am usually not one for a motto or catch phrase but I have to hand it to Nike, "Just do it" runs through my mind once in a while when I feel stuck. 

Being compassionate allows you to give your strength to others, while building more for yourself. I have never given anything to another person, and not received as much or more back to me. It may not be right at that moment yet the moment of giving and helping can make you feel so good there is nothing needed in return. 

And finally, being loving, allows me to be loved. Loving someone means that you care as much about their happiness as you do your own. That very fact makes compromising easier, and compromise is essential for a healthy relationship. 

I cannot dwell on the "why" of this surgery, it just is. I am open and flexible to whatever needs to happen now to make this right. I am truly compassionate to those around me who have walked every step with me, including the doctors but especially my family. I am confident enough to just do it. I am fortunate to love and be loved and that is what will get me through this.

On Saturday, I woke in a bad mood. I opened my eyes and my immediate thought was defeat. It had been eight weeks since my surgery. I had spent 5 days in ICU, 2 in Neuro Step down, and 27 in a rehab centre. Barry was there every day with me, so was Jerri, and Meghan every weekend. We had been home a total of three weeks when I found out I would require another major surgery. I have worked extremely hard to get where I am today both emotionally and physically, I didn't want to think about doing that all over again. I couldn't. I felt depressed. Barry felt depressed and we later talked to Jerri who sounded so unlike herself I thought it was someone else who had picked up her phone. She had been thinking about the surgery too. Meg was on a much anticipated camping trip and luckily away from the thoughts of surgery. 

So on Saturday I wrote about depression, which I found hard to do, but I know how important it is to acknowledge that it is a part of the process. 

Depression is a common problem amongst those of us who deal with chronic situations. One of the main reasons for this is biology as stated here from an article on Web M.D. 

"Some of the overlap between depression and chronic pain can be explained by biology. Depression and chronic pain share some of the same neurotransmitters -- brain chemicals that act as messengers traveling between nerves. Depression and chronic pain also share some of the same nerve pathways." 

While that is one of the reasons, I feel the main reason is the loss of independence and social interactions to be a strong contributing factor. Many times life feels like it goes on without you. 

There are many things I can't do that I once loved to do. Canoeing, wilderness camping, or even an all day shopping trip with my girls to name a couple. I have over the years seen what it can do to relationships and my state of mind, therefore I have pushed myself to do whatever I can to be social. There are days when that is just not possible, and we all have those days, but don't let there be too many of those. Having people around you and adapting the situation so that you can have people around you is so worth it. With other people comes news of their lives and something other than what is happening to you to talk about. Yes it is great to commiserate with others, but you can only do that for so long before you and the other person gets tired of hearing it. 

So back to Saturday, I was feeling like I had good reason to be feeling the way I was and I certainly understood Barry. He had been and still is the ultimate caregiver, and that's a tough job. When I heard Jerri's voice I couldn't handle it. She deserves so much more, more than to be sitting at home in Toronto worried about me. None of us can change what is going to happen. What we can change is our attitude about it. I encouraged her to go out with friends which she did on Saturday night. It had worked for us the night before. Barry and I had gone to our dear friend's house for a retirement party. It felt good to be among friends and celebrate life. 

Saturday we just puttered around the house and it was a dreary day, we had let the enormity of the situation get to both of us. 

Barry was painting our front door and I was sitting in the living room chatting with him when my friend Mary showed up to drag us out of our slump. Mary just appeared with the gift of Homemade jam. Ironically that morning Barry had said we were out of Jam! It was so nice to have someone break up the afternoon with us and change our thinking a little. Jerri did go out with friends on Saturday night and for a hike with friends on Sunday. Barry, Whinnie and I took the boat out in the Bay on Sunday. We floated around and read our books. I even had a dip in the lake to cool off. We made plans to go out for dinner to celebrate our anniversary with friends that evening. 

I won't say the slump is over, or that it won't hit us again, but we all sure put a dent in it with positive experiences with friends!

I'm feeling lost. Feels a bit like what I imagine a ship without a rudder would feel like as it moves through the ocean. I was finally feeling a small sense of accomplishment and control, just as a huge wave came along and threw me off course again.

I'm having a lot of difficulty making sense of all of this, therefore I find it hard to write. My friend who recently had a spinal surgery had asked if I would write about the negative emotions and depression associated with these major surgeries. I had tried several times, but always abandoned it. I'm not sure who would want to read it, I always thought. Today I'm having a very tough time. I'll try to find the words.

There are many kinds of depression. Chronic and acute readily come to mind, but there is also situational and clinical. This link helps describe some the the differences. 

The situation I'm in, and many people find themselves in, is what can cause situational depression. That is, there has been a change in your life that has become difficult to deal with. The changes are not welcome and disrupt the normal flow of your life. Adapting to change that you likely didn't initiate, has negative implications and takes some serious support to get through. A sense of defeat can creep in and settle in if you're not careful.

Consider my friend who had suggested I write about this. A normal university student going through life with all its demands, and adventures suddenly struck down with an illness or injury, life stops. At least life as you knew it stops. It is hard to be a part of a young vibrant group when back pain is crippling you. People around you are often shocked, understanding and helpful, for awhile then they get on with their lives. Some have a select few who hang around and support for the long haul. It literally takes your life as you know it from you. There are bits and pieces you grasp onto, but the main focus of your existence has become your pain. That causes a sense of loss and grief and more often than not, depression. Medication often prescribed for said injury or illness can also be adding to depression. Having a sense that your life is out of control can make you feel alone and different than your peers; and that you feel you no longer fit in. Every event, every celebration and gathering has you feeling a sense of loss and sometimes even grief for the person you used to be.

All the while your emotions are going through all of these ups and downs, you may be dealing with a frustrating medical system that doesn't always work as fast as we would like it. Many chronic pain sufferers do not sleep well. I've just described a recipe for a serious, chronic, depression.

Depression is not the blues. It is not a day of not feeling well, it is a serious lost of interest in life, coupled with a profound sadness. If you or someone close to you seems depressed talk about it, educate yourself and most importantly get help. This link is may help. 

As far as I'm concerned, I have worked very hard to deal with my loss and to this point, not fall into a depression. My strategies are varied but always include having supportive people around me. I love to have happy people in my life who are not falsely positive or add pressure to "look on the bright side" but those who truly care. Those same people have had me at their side when they have needed support.

There have been many times that I have been mildly depressed throughout this process; but I have worked hard to recognize it, and stay ahead of it. Thankfully I have been able to do that but for many people depression is a very real part of illness and pain. The best support you can give at a time like that is to be there; offering whatever you can, to make the life of the person dealing with depression a little easier. Counselling, talking to a doctor and getting out in the world in whatever capacity they can will help.

We have a lot ahead of us once again. Last evening we got a call confirming my MRI for next week, so the ball is rolling. How fast it is rolling, only time will tell. We are working hard to keep over head above water on this rutter-less ship and so far we are both dry.

It was a cold day in July, in Newfoundland 22 years ago today as Barry and I said our I do's. We said some other of the traditional vows such for richness and poorness, and in sickness and in health. Our lives together have been rich but not in the way you would think. It has been rich with love, compassion and compatibility. And in the same way our lives have been healthy. We have a healthy relationship that we are grateful for it every day of our lives. Our life plan has not been without a few major bumps, we have endured them and become stronger and more in love in spite of it all. 

Happy Anniversary to the love of my life. 

Barry has been with me through thick and thin and we have made each other laugh at the worst of times and there have been many moments that are so beautiful they have made me cry. I think that's all we can ask for in life is a sprinkling of those moments mixed amongst the ordinary ones. 

Many of you have bits and pieces of the history of where I am today with my back. The first real signs of back pain happened after I fell from a chair with wheels that got caught in a rug at the Crisis Centre where I worked at the time. It hurt and as I do with most pain I downplayed it and went on with my job. It wasn't until I was pregnant that I started to feel a sore back all the time. Once again I downplayed that because who doesn't have a sore back while they are pregnant? Mine became so bad toward the end of pregnancy that I started to have pain down my legs and my legs started to give out. 

Fast forward to being pregnant with Meghan, I had pain back but it became increasingly worse and it was in a very different position. This time although I had low back pain it was the mid back that was causing me so much pain. Everyone thought it was my gallbladder because of the intensity of the pain and it made sense because many of my family had had gallbladder surgery removed. The pain was in the right place, and after a scan we saw there were stones in the gallbladder. The only problem was after removing the gallbladder I still had the pain. 

My first surgery was an unusual one. It was to release the spinal cord from a torn dura. My dura, a protective coating around the spinal cord, had ripped and the cord itself had pushed its way out through the opening. It was called a herniated spinal cord, not to be confused with the much more common herniated disc. It was a very rare surgery and one that would save me from paralysis. It was very risky and I was told the surgery itself could cause paralysis. When all was said and done, I had to learn to walk again. I'm an incomplete paraplegic. I had learned to adjust my life accordingly and was doing fine until last spring. 

Last spring, I had been having low back pain that was getting increasingly worse over time. I ended up with a kidney infection which in a convoluted way led me to an MRI, which told me I had severe spinal stenosis. 

By the time I was seen by Dr. Fehlings in August, I was in bad shape. I had so much leg pain from entrapped nerves I couldn't walk more than fifty yards. I was in pain all the time. I wasn't sleeping and was not living my life. He saw all of that and booked surgery for September 9th, 2014, planning to do the least invasive procedure under the circumstances. It still was a risky surgery dealing with nerves and cutting bone in the spinal area. It is called a laminectomy and I also had a foraminectomy with decompression. To avoid risk of infection I was released later that night. We had to stay in Toronto for the week and then were cleared to go home. Life at home was good. There was pain of course, and recovery was hard but okay. That was until I started to have pain in the leg again. 

In seeing me for follow up Dr. Fehlings had explained that the area was much more fragile than expected and even though they had hoped the smaller surgery would be enough it was clear that the area was unstable and required hard wear to keep it in place. That's when the past surgery, the Fusion was scheduled. 

A cage with the bone for bone grafting is in place between two vertebrae. It adheres to them and over time grows bone, thus creating a fusion of two or more vertebra. 

In my case that cage did not adhere to the vertebra and has now moved forty to fifty percent out of place and is toward the spinal cord. It has to come out and be replaced without a cage this time. This time only the bone with be used. This is a procedure generally used in the elderly. 

It will require all the same steps to prepare, MRI, CT scan, pre-admit. Then booking an OR when all of that is done. They say the surgery will be booked soon but I know how slow the system is so I won't hold my breath. 

So in keeping with the anniversary. I want to say thank you to my husband for being there for me though all of this. I also want to thank my family and friends who have been there for him to help give him a much needed break or listening ear. I couldn't do this without him, and am relieved to know he is by my side as we prepare for the next challenge. 

In the picture above, you will see on the left my currant X-ray, on the right a cat scan taken the day after my surgery. You can clearly see where the cage has moved.

It's been two nights since we got the news that I will need another surgery. When we wake up it feels okay for that first minute before this realization hits. It almost makes me feel sick. I am somewhere between disbelief and screaming. This was supposed to be the downhill run. It was almost over. How can this be happening all over again?

Those are my thoughts, my feelings, yet I know sometime in the not so distant future, I have to summons the courage to stand up straight, push those shoulders back and do it all over again.

In a past post I had talked about the need to feel the pain and work through it before trying to put on the positive face of moving forward. I guess this is the working through stage. It is painful. I don't understand how this complication had to happen and I don't want to go through all of the acute pain and recovery again. With a piece of metal headed for my spinal cord, I don't really have a choice. They have to do whatever it takes. I have to live through it. My family have to witness it....all over again.

Our lives have not been easy this year. It's been over a year already of dealing with extreme pain and surgeries. This started in it's intensity last spring. I had the first surgery on September 9th. The recovery was good until a disc slipped forward and it became clear my spine would not be stable without screws and rods. At that point I knew without doubt, I needed the surgery. I was having a lot of pain again. I could also feel the movement in my back and it scared me. The pain in my legs became increasingly worse as time went on.

The second surgery, this past one, was a major one. It was several hours long, between six and seven hours. There was a lot damage, even more than an MRI can show, so it took longer than expected. I knew going in that because of my spinal cord injury, there could be a longer more complicated recovery time. It was exactly what happened. Thankfully my expectations were reasonable.

I'm about to prepare for another long intense surgery and recovery, I'm at a loss for words because right now we are working through the feelings.

Tomorrow's blog I will detail all three surgeries, because it is confusing, and many of you have asked for explanations. For now I will sign off and try to find my way through this so I can come out the other end with some courage to get through this again.

The time had come to go back to Toronto Western to see my neurosurgeon. I was anxious to show my progress and ask what I could be doing to make it go faster. The drive there was a concern for us, but we had a solution. We have good friends in Barrie, although they were on holidays they gave us their home as a sanctuary for on the way there, and back. 

We headed out on Monday evening for Barrie and spent the night. It was as it turns out a good choice. I was squirmy and wanted to stop by then. 

The next morning we left early and even through the traffic was heavy with the Pan Am games in town, we made it there in time. 

I had gone to X-ray, had an X-ray of my back, now it was time for the appointment. Sitting in the waiting room I had no idea of what was about to hit me. 

I was called in to first speak with of the Fellowes, which is always the case. He went over my CT scan from the day after my surgery, then pulled up the new X-ray. Barry and I both looked at it. I pointed to the cage containing the materials for bone grafting which had been inserted during the surgery, and asked if it should look like that. I got a vague answer. 

A neuropathic physical was completed which, of course, showed my deficiency. No surprise to me, I've been living with it. My right foot is numb, it hurts and swells. My right leg is very weak compared to the left. 

The Fellow said "We had hoped you would have been better by now." My sentiments exactly! 

He left to get Dr. Fehlings. After saying hello, shaking Barry's hand and hugging me, he cut right to the chase. He said there is a problem. 

Right then and there, it felt like the air was sucked out of the room. I felt as though I might be sick. I looked at Barry, he was pale. We were not ready for this. Nowhere near. What we were about to hear wasn't even on our radar. 

I had an L4-S1 fusion. During which, a spacer was placed in between L4 and L5 vertebra that is a metal cage, containing bone for bone graphing. When I looked at the X-ray I could see that cage. It looked crooked to me. Of course I am not a doctor, and cannot read X-rays but it didn't look right. My suspicion was correct, it isn't. 

That cage is supposed to stay within the confines of those vertebrae, then bone grows as the vertebrae fuse together. However in my case, the cage has shifted by 40% since the surgery when the CT scan and the X-ray were compared. This can cause a multitude of problems. 

It has to come out. 

What that means for me, us, is another surgery, another recovery, another week in the hospital and a possibility of a rehab hospital. The wind was taken from both of us. We sat in shock, as did Dr Fehlings. It is rare for a spacer to shift and something that has never happened to any of his patients before. He apologized several times within the course of our conversation. It's not that it is his fault; it happened because the vertebrae is just too weak. He said it looks similar to one case he worked on last week, except she was in her eighties. 

The surgery will happen soon, soon in hospital terms which could mean weeks. I am not feeling recovered enough to go through all of that again. I'm still feeling raw from the intensity of that whole experience and now I have to summon the courage to do it again. I'm not sure how to do that. 

I know for sure when I looked around that room yesterday at Dr Fehlings and Barry and their concerned, disappointed faces that I have the best two men at my side. I couldn't ask for better. However, how much can one husband take before caregiver burnout happens?

Stay with me on this convoluted journey, I have appreciate the support along the way.