Ok........I'm 5 months post-op!

Wow! Recovery is hard work. Exhausting in fact. The daily and then weekly milestones have stopped. I am now at the point that I am realizing every 2-3 weeks the little changes. I have seen Dr. Glazer and he has approved my returning to work part-time on November 1 with a full-time return slated for the New Year. I am very grateful that my employers have held my job for me. VERY grateful.

I feel pretty good. I still have neuropathy in my right leg and foot. I now experience some very painful sensations on occassion. I'm not certain if that is good news or bad news. I prefer to think that it is good! I still experience some lumbar discomfort but usually a change of position or laying down for a bit helps greatly. I have found that keeping up with a walking regimine is what makes me feel best. But I HATE to exercise. I HATE to sweat. But my back does feel better for it. I have also found that using shoe inserts has helped my knee's a little bit. I'll take anything I can get.

What if...........

During this time, I successfully weaned myself off Oxycontin. I hated that drug. I know it was my best friend for a while, but anyone who knows me, KNOWS that I hate drugs. I prefer not to take them - heck, I don't even get Novocaine at the dentist unless the dentist says, "Valerie, trust me, you NEED the Novocaine!". If I don't need it, I don't want it!! And I did not want Oxycontin anymore. However, you can't just stop taking it, you must wean yourself off of it or you will put yourself in a situation of having to endure withdrawals!! Yuck! Gross! No way!! I spoke with so many people as to HOW to get off of Oxy, I put all of the information together and determined that the slower you go, the better the outcome. So, although I am not a person who possess' much patience (OK, I possess NONE!) I was also too scared to go through any type of withdrawal. That is too "drug addict" for me. The whole concept frightened me more that the hatred of  the drug. So I took it slow and I started basically the day I came home from Rehab and it took approximately 8 weeks. I am happy to say I'm off of it, BUT....I do have pain. But tolerable pain. Post-surgical pain - so it's okay. Now as to the other medication I take....the name of the drug is Neurontin. I take it for nerve pain - the neuropathy in my right leg and for sciatica, actually any nerve pain. Neurontin was originally designed for epileptic seizures, but after a while it was decided that it wasn't as great as they thought it was going to be for that, however they found that it did seem to work phenomenally well for nerve pain. All I knew was that it was either Oxycontin or Neurontin that had stolen my memory for a long time. At first, I assumed it was the Oxycontin. I suppose because Oxycontin has such a bad name and everyone knows by now that it is quite addicting. Not only was I was on it for 4 months, I was on a relatively high dose, so I wanted off. However, during the weaning process, I was also suffering from SEVERE leg, ankle and foot edema. It was more prominent in my right leg, my "bad" leg, but I definitely had it in both. I sought advice from nurses, Dr. Glazer, other doc's, other revision patients and I did everything that I was told to do. I raised my legs (which I couldn't really do or I found it painful in my lower back, but I would try!) above my heart, I started drinking alot of water, I started moving around and walking more and I wore compression stockings. NOTHING was helping. I was growing concerned. I went online to check out Neurontin and opened up Pandora's Box - I found all kinds of information that many, many, many people reported significant memory loss AND severe edema!! Hellloooo......are you joking me, right? So I asked my sister-in-law (the nurse) who checked with a doc she knows and called me and told me that the doc didn't feel that the Neurontin was a bad drug nor the cause of my edema but instead suggested that I get some routine blood work to rule out something called Third-stage Phasing (don't even bother to ask, the blood work came out perfectly normal! Even my iron count was great!) and to stop taking stool softeners!! As it turns out, stool softeners are actually high in sodium!! Duh! So I stopped, now.....not to be gross, but I was a little concerned about doing this but not only did the edema decrease dramatically but suddenly I was as "regular" as can be!!!! And I was still on the Oxy then which should have really been a problem, but it wasn't. So much for stool softeners! In the meantime, although this doc nor my rheumatolgist nor my pharmacist felt there are any major issues with Neurontin, I was still plagued by what I had read online from other patients regarding the memory loss that I have had. I know that all of you are sick and tired of hearing about my memory loss, but it bothers me. It scares me. I don't understand how someone can lose such a chunk of time. Please try to put yourself in my shoes for a minute - imagine if all of a sudden right now, you didn't remember any of my previous blogs? Nothing, not one piece. Imagine that all of a sudden you are reading this and saying to yourself, "who is this that wrote this, why is she writing to me and why don't I remember why I'm reading this?" - wouldn't YOU be frightened?? I think if you were honest, you'd admit you'd be scared shitless. That is sort of how I feel about TEN weeks of my life! I know that there are no memories there that I need nor really should want to remember, but my question is really - HOW COME I have no memory??

I did ask Dr. Glazer about it, he didn't seem all that phased and we actually joked about how it was probably good that I have little memory of most of it. He always describes spinal revision surgery as the "most grueling surgery known to mankind", hands down and that spinal revision is not a surgery for "wimps" - so although I have accepted that I have little memory or in some cases, no memory - I just want to know why? That's all - why? At my appointment last week, I had the usual x-rays and everything looked good. I will post a pic of it in the sidelines soon. As was the case at the last appointment, every screw, every bolt, every rod is in place. He said, "it looks good". My visit with him was close to an hour and he answered many more questioned, reviewed the exact process of the surgeries and what he did exactly and he also commented that, as scary as it sounds, he was just happy that my legs actually function and that I am walking?!? He said that there were so moments there that I caused the whole OR team a few scares and that he had so much work to do that it was.....well, daunting. I hadn't realized until I was sitting there with him, watching his eye's and facial expression, that he is just very relieved to seem me in the condition that I am in. Clearly, it could have easily gone in the other direction.

We discussed the neuropathy issues in my right leg and he is sending me to a pain management physician who he feels may be able to help me better with a different medication than Neurontin, as it clearly isn't doing what he had expected it to do. Unfortunately, the sciatica pain has increased as I am weaning off the Neurontin - which isn't so wonderful. I have re-started my walking regime and just last night walked almost a mile and a half. Not bad, huh? But........it took me almost 40 minutes!!!!!!! OMG!! I used to walk 4 MPH! Guess I won't soon be entering any marathon's! I had to walk very slow or the sciatica would start bolting through my leg, so I just took it slow. Hey, what are you going to do?? I was walking at a favorite walking spot, the Avondale Preserve. I LOVE walking in there and I am no nature buff!! (Although I wish I were! It sounds so appealing to me to be "one with nature" but the truth is that I just HATE bugs too much and I HATE to sweat! Double YUCK-YUCK!!) But there is something peaceful there as you pass by the horses and donkeys and some other animal that I have no idea what it is, and the Adirondack chairs perched in people's lawns AND there is an absolutely beautiful home in there that I have adored for years. People walk by you and smile and say hello. There are roller-bladers, families with small children just learning to ride a bike (aw..doesn't that bring back cherished memories of your own children?) and people walking their dogs. Thankfully there are now signs asking people to keep their dogs on leashes - I have had too many experience in the past when I used to roller blade and run (years ago - obviously!) and I would have my iPod on and not hear some dog come running up behind me and scare me half to death. Once, one jumped on me from behind, causing me to fall! I was pissed - the owners were quite a distance behind me and I waited for them and told them "hey, I've got a bad back and I out here busting my butt trying to stay healthy and your dog jumped on me and caused me to fall!" and they got mad at me!!! Jerks!! People - keep your dogs leashed, it is not fair to others out walking, minding their own business! And even if you have them on a leash, don't give them so much line that they come into our space anyway! When someone has an iPod in their ears in a supposedly safe area marked for walkers, don't let your animals dominate! You wouldn't allow your kids to run up and jump all over people, so why do some people think it is okay to let their dogs do it?? Personal pet peeve of mine, can you tell? Anyway, the walk was lovely even though the sciatica is concerning to me and no, I haven't called the Pain doc yet (you must know by now that I am a procrastinator!!) When I did get home, I did do the unthinkable though. I took a Percocet. Yes, I took drugs!! Then I showered, took my PM Neurontin and called it a night!! At last, I felt like I had truly accomplished something.

The other information I received from Dr. Glazer last Thursday is that I can also start "weaning" off the brace!!! YEAH! It is like 6 or 7 weeks earlier than I was expecting to stop and he explained that he feels that because everything looks really good, that it is time. The big concern is that the longer that one wears a brace, the longer the core of our body atrophies and we have all heard enough about how our "core" helps strengthen our bodies and our walking gait. However, he said I can't just stop using it because so many muscles etc. have become used to be held in and up and everything and that if I just stopped wearing it all of a sudden, I would end up in a lot of pain. So his advice was to start decreasing the hours in which I wear it by an hour for a day or two, and then increase that time to an hour and half etc. I asked if I had to wear it while walking and he said I didn't - that really pleased me because I can't explain to you how hot it is while wearing this contraption! So, I've been weaning ever so slightly and actually rode in the car today without it!!! Ben took me to see my Dad and then we went to the grocery store. I haven't been to the grocery store four months!!! Imagine that?? That is a long time, isn't it? Of course, he did all of the work, I just pointed and told him what I wanted!! Ha! Ha! Poor kid, he is my personal assistant for the summer! I was exhausted when we finally came home. I basically put most of the stuff away with some assistance from him, took my afternoon meds and decided to lay down when my housekeepers arrived. I soon fell fast asleep. I didn't sleep too long, maybe about a half hour or so, but it was a deep sleep. I think the thing about this experience has been the sheer exhaustion that comes with the simplest of tasks. I had been forewarned bymany people who have walked this path before me how I would be depleted of all energy, but unless you actually experience it, you couldn't possibly understand. I wonder myself how my day's pass by, but I can tell you that they fly by because it doesn't take much for me to have a very full day - doing not much! I am in awe of what I was able to do in a day, pre-revision and in all of that pain! How did I do it? Now, for example, just sitting in a car, visiting with my father for a few minutes, walking through the grocery store is exhausting, simply exhausting. I ended up laying down and resting for a couple of hours in all and then got up and did some mindless tasks, made myself some dinner because I was home alone tonight (well, ok, I just microwaved a frozen Amy's Organic Enchilada dinner! Actually that is a lie, I had Ben do it for me before he went out!). I am sitting here at almost 9PM on July 21 typing this, I can't be more up to date than I am now. So here we are. I will be getting ready for bed now, and I will lie down and as I dose off, inevitably my mind will be filled with...........what - if this, what - if that. What if, what if, what if?

As time goes on.......

Between my June 3rd appointment and my next one on July 15th, many changes occurred. When I was released from the Apple Rehab facility, I was discharged with orders to receive home health care. It was decided that I would use the VNS of South County and that I would have the care of an RN, a CNA and a PT. The PT part I was a little confused with because generally PT isn't started until - at minimum - the 6 month mark. But, hey - what do I know??

I received the call from VNS and a nurse was to come out the next day. The CNA's started the following week to assist in my showering, changing my sheets, starting laundry, preparing lunch if I needed etc. The PT arrived the following week. The nursing care only lasted two weeks as they soon realized that I really didn't need any nursing care. My incision was almost healed and my health in general was very good. Phew - done with one. The CNA's I needed longer - I could not shower on my own. In fact, I couldn't even shower in my own bathroom, but had to use the kid's bathroom. Our tub has a jacuzzi bottom and it was too high for me to lift my legs up into. The kids bathroom has a standard tub which made it much easier. By the time I was able to progress to my own bathroom several weeks later, I realized that I could basically do it all myself - so I fired the CNA's! No, I'm only joking, but I did let the PT know that I felt very capable on my own, so we decided together that I was more than able and to tell yo the truth - I was sick and tired of being naked in front of strangers!!!! Ha! Ha! For God's sake, I've been naked in front of more people than the average person. Well, I suppose strippers feel that way too!!! Ha! Ha! But more than that, I was sick and tired of having to be at the mercy of someone else's schedule, you know? Now keep in mind that I had five or six different CNA's in just a few weeks time! One day they would want to be here at 8:30 AM, another time they couldn't get here til 3PM. Ugh. I was just done. Besides, it gave me back a little independence and I think the the fact that I recognized and wanted to reclaim my privacy and control was a good thing.

During this time, I also realized that the PT assigned to me really didn't have a clue about this type of surgery, recovery or what could or couldn't hurt me. It dawned on me several times that I wasn't even sure I should be having PT. I'll blame it on drugs - AGAIN! I would think of things of concern but hey would leave my brain as soon as they entered. One day I received a call from an acquaintance of mine, who is a PT with the same organization. She was filling in for my regular PT. I instantly loved her approach. Now, as it turns out, she actually is very good friends with my sister-in-law, but I don't know her well at all. However, my sister-in-law had kept her abreast of the surgical "journey" through the emails that Erica was regularly sending out. She also has some spinal issues herself and I found her clearly educated on the spine and she continually expressed correct body mechanics to me. After the next couple of sessions with the previous PT, I knew I needed to have a change. I expressed this to the PT I wanted and she put in the request for me but as it turned out, their territories were being changed or more strongly implemented as I really did fall under this new PT's territory anyway. She had a completely different approach, much more gentle whereby she incorporated gentle manipulation and stretching, including edema massage. She gave me isometric exercises to strengthen my core. She did comment to me that the previous PT had commented that I was "fearful and scared" to try anything new! I knew that the change had been right. Now I am NOT saying that the first PT was not good, she may in fact be a great PT, but unfortunately she was most likely well-versed in dealing with older people with different limitations than a 48 year old woman just having undergone 3 major, MAJOR spine surgeries of a nature that she was not familiar with  - at all. She did not understand or comprehend exactly what I had been through or what the expectations are. For a couple of more weeks, I had PT with my new gal. That is until I saw Dr. Glazer on July 15. Oops.................guess I wasn't supposed to be having PT after all!! Yikes! Here we go again.............what if??

Arriving home.........

Walking into my house was a joyful moment. For all of you that know me well, I am a homebody, and there is no where I'd rather be than be at home. The car ride home was not only uncomfortable, but I was filled with excitement to just be here. Bob and I had a little lunch and off came the brace for me to lay down. Ben came home from school and then Erica a little while later. My sister Ursula came by, the phone was ringing off the wall and I was tired. Although I was apprehensive to be without any nursing care for the first time in a long time, and almost overwhelmed, I fell asleep and slept the whole night through. Bliss.

I came home from the Rehab using a walker and I had borrowed an adjustable bed from my friend Glenda and we made our study into "Mom's room"! It's peaceful and quiet and allows for good sleep. My dear friend Sherry organized yet another cleaning frenzy, calling in all of my family and friends, including Diane and Jill, Robin, Glenda, Dee, and Ursula did practically nothing but clean for me. I've never had such a clean bathroom. Plus, she was here every day. Sherry came the Friday night when I came home and basically never missed a Friday night until Ben's graduation!! Then resumed again. She called and checked on me. I have a couple of friends who were my constant sources of healing. And my kids? Oh dear, they give me reason to live.

I went for my first post-op visit on June 3 @ 11 AM. I had "downgraded" from the walker to a cane by now. I didn't like the feel of the cane, so I often would experiement with using neither the walker or the cane. Unfortunately, I did still had to rely on the the walker if I had to go to the bathroom in the middle of the night  because of the severe leg weakness.  My sister Ursula brought me. First, we met with a sweet young gal by the name of Nikki who is the sales rep for the Bone Stimulator that Dr. Glazer requested that I use. I already knew how to use it as I used it two years ago when I had my cervical fusion. The sweet part of this story is that I have been having a phone "friendship" with this young woman regarding my old stimulator for over a year now. She was fully aware that I was going ahead with my spinal revision in March. Sometime between surgery #2 and surgery #3, Nikki made an unannounced visit and I was so touched by that. She made a point of telling me that she doesn't make it a practice to visit her clients patients, but she felt like a friend!! Isn't that sweet? The bad part of the story?? I only remember that she came, I couldn't tell ANY of the conversation. Of course, I just don't remember! Big shock, huh?

So after talking with Nikki, I had arranged to me with the "brace man"!!! Ha! Ha! The brace was no longer fitting me correctly as I had lost weight through the surgeries and it was now too big. So he re-adjusted it and cut off the extra Velcro from the tabs and also taught me how to put it on myself - because up until this pint, I was reliant on others to do so. He was a nice guy - although I can't remember his name. His partner was Bob, who had originally fitted me, but I just can't remember this guy's name. Oh well.

Then on to Jeff, Dr. Glazer's PA. I threw out all of my questions and he answered a few, but then as always, replied to many with, "We better wait and ask the Big Guy!". Then Dr. Glazer came in and he seemed so happy to see his remarkable results. The visit went well and everything looked good. He said Icould ditch the walker and the cane and try it on my own. I asked, "How often and much should I be walking?" and in typical fashion, Dr. Glazer replied, "When your tired, STOP! If it hurts, STOP!". Okay, then! Hallelujah! I was now about one month post-op from my third surgery. I'd be lying if I didn't tell you that I was still scared. Scared of the "what if's". What if the fusion doesn't take? What if a screw moves? What if one of the new rod's shifts? What if the neuropathy in my right lower extremity doesn't go away? What if my sciatica worsens? What if this doesn't end up a success story? What if, what if, what if?? I can drive myself crazy with what if!!!!

Arriving at Apple Rehab.............

May 13, 2010
I arrived at Apple Rehab in Mystic, CT at around around 4 or 5ish (I think). The funny thing about this facility is that my 92 year old Aunt Sarah was there as well!! How funny is that? I didn't originally pick this site, they just happened to have an opening and the Apple Rehab in Westerly did not. The ambulance crew is wheeling me down a corridor when all of a sudden it sounded as if they whole place joined in loud clapping all at once and I saw all of the people lining the hall way and who was in the center of it all?? My Aunt Sarah!! She was soooo excited to have her niece there with her now. They wheeled me to a private room (thank God!) and I was suddenly bestowed with attention and kindness that I had not received from nurse's at BIDMC, that's for sure!!

The private room that I was in had just been renovated and because I arrived a couple of hours earlier than I was supposed to, it wasn't quite ready. Their maintenance guy, Michael, was in there rushing around trying to do ten things at once. They kept apologizing and I kept telling them it was okay. The room was spacious, with a beautiful hardwood floor (just installed) and bathroom (which actually could have used updating!) TV and wireless Internet access. When I arrived, I was still reeling with some bowel issues (due to another bout of that damn constipation and stool softeners and enemas! UGH!) but true her word, Aunt Mary went to Steak Loft restaurant and came back with the most succulent steak dinner! After all of that hospital food, I was in heaven. The only thing was, I didn't have a very big appetite. But it was delicious!!!! Plus, I think my blood was craving pure protein. I was in a lot of pain and they had told me that I was going to get just Percocet until the Oxycontin came in, but that it was ordered. They never said it wouldn't be in for almost 24 hrs., but nonetheless, they were right on time, every 4 hours, feeding me Percocet - doing everything they could to keep me comfortable.

When everyone left that night, and lights were out, I laid there and started to cry. I was scared. Like a child. It was the first time that I had been "alone" in months and I didn't like it. Fortunately, I soon fell asleep but only to have to wake up and go to the bathroom. I rang the bell and a older, male nurse came to my side. I was slightly embarrassed, but hey.....it's his job, right? But he was so gentle, so sweet and so compassionate. He came back to give me my med's and he mentioned that I wouldn't see him again as he was starting a 2 week vacation the next day. Because I was so lonely and scared, I embraced him in a conversation. I asked him where he was going and he told me Texas. That was where he was from. So I asked him "Where in Texas?" and he said, "Midland" - I kept asking him questions, and he kept answering. I was scared and in so much pain and I told him that the more he talked, the less pain I noticed. What a sweet, sweet man. He must have stayed there talking to me for 30 minutes, until I finally fell asleep. I never saw him again.

The next day was sunny and that beautiful sunlight was streaming through my window and for the first time, in a very long time, I felt hope. I prayed to God, hung onto my rosary beads (that were my mothers) and was filled with hope. That night I went to sleep, not afraid at all. I KNEW that I was really going to be okay after all.

Just a couple of quick notes about this facility, Apple Rehab - Mystic. I would recommend it to anyone who has to endure a rehabilitation. The people that work there are the kindest people that I have ever met. I wish I could remember  every one's name - there was the night nurse Bob who I really liked and Linda, another night nurse. Then there was the gal, who's name was a traditional guy's name, like Sam or something. Loved her, very sweet. The other daytime male nurse, who I really liked too - but I suddenly can't recall his name. The CNA's who helped me shower were so, so sweet. Oh and let's not forget Michael, the maintenance guy, who barely missed a day without popping his head in to say hello. On the second or third day there, he was installing a new closet system in my room (along w/ a gal who's name I can't recall right now either. I referred to her as Michael's gal Friday, because she was always helping him!) when I came back from PT. I was pooped! I laid down and he asked if I wanted him to leave, I said no. Well, I guess I fell sound asleep, right alongside his saw and electric nail gun and screwdriver. He came the next day and told me that I fell asleep in about 2 minutes and that I was in a deep, deep sleep never stirring, even with all the noise!! He said I was the most "beautiful and peaceful" sleeper, "almost angelic". Goes to show he didn't really know me, huh?

PT was fine. There was a student there who was sweet. I can't believe that I can't remember their names. However, one day, at just about the two week mark, I mentioned to the lead PT that I was ready to go home!! Now! She said, "OK, I'll tell Kathy". I spoke with Kathy myself later than afternoon and we decided that I could go home the day after next. On this particular day, my Aunt was being discharged. I went and said goodbye to her and was excited about finally being able to go home myself. Yeah!! Home. I hadn't been home in almost 6 weeks. I couldn't wait.

Surgery #2, #3, bad drugs and Mother's Day!

Evidently I was in ICU for three days with a breathing tube. I barely remember it. I do recall waking at times and realizing it was still there and panicked. I was able to quickly reel myself in and always repeated, "Just go back to sleep" as I attempted the rosary. Once again. Me and the rosary. I don't think I ever got past one or two Our Fathers, but I sure did attempt it many, many times! I really remember very, very little of the following 9 days until the next surgery. My mind is completely shut to the memory. The truth is that I remember nothing, except for pain when I would awake periodically. Because I can't remember, I've asked my sister Ursula to "fill in the blanks" - this is what she has said:

"You went to ICU where we saw you before they left to come back to Westerly. I went to the hotel to sleep, only to wake and call the nurse at 5 a.m. to see how you were doing. A couple of hours later I was by your bedside for 24 plus hours. Because you were intubated and couldn't talk, you spelled out words on the sheet letter by letter. It was grueling to understand what you were trying to ask. However, after many attempts I understood you wanted to know the outcome of the surgery. I remember asking you if you really wanted me to tell you and you replied yes with a nod. I delivered the news that the surgery had not been completed because Dr. Glazer was concerned for your safety, as you bled so much and the dura was practically non-existent again. It all but killed me to tell you the truth. Part of me wanted to lie to protect you but I knew I couldn't do that. You couldn't talk but your eyes started to tear up and my heart broke for you. It was one of the most difficult times in my life. You continued to spell out words on the sheet. I felt so horrible trying to understand you, sometimes with little success. One time, after quite a time and much frustration on both our parts, I figured out you were having a hot flash! I then took off the covers and fanned you. I felt so good that I could help you in some way. When they took the tube out three days later, you were so happy. You so hated that tube! A day later you were able to have some liquid lunch and dinner. The following morning for breakfast you had a whole breakfast sandwich. It was great to see you eating but I really was wondering what was going on in your head. I was fearful of that. Didn't know how you were going to cope until the next surgery.


He called after the third surgery about 4 p.m. while I was waiting in your room. I could tell by the tone of his voice that he had good news to deliver this time. He told me that he was able to complete the surgery, without all the bleeding as before. He was confident that he had accomplished what he had set out to do. I sensed that he was quite relieved and told me to get something to eat as you would be in recovery for awhile. He did not call at any other point during the surgery. I was elated and proceeded to call the rest of the family with the fantastic news. I was allowed to see you in recovery a couple of hours later. I couldn't wait to see you. As agreed upon that morning, I would give you a thumbs up if the surgery was done. I walked over to you and gave you the thumbs up and told you it was over and successful. Your eyes were aglow and you had the widest grin ever. Couldn't tell if it went from ear to ear, as your head was wrapped in blankets because of the cool temperature in that room. I can't tell you how happy I was that it was over, as I don't know what would have happened if things had gone the other way. Thank God for the prayers and positive energy we received. At that point I took a long walk down to Fenway, had a bite to eat and went back to the room to wait. I was so happy I could have walked all night long! The adrenaline was flowing readily! What a great smile you had when you were rolled into that room. No more ICU for you. That was quite a relief in itself. A good sign at that."

I don't remember writing words on the sheet at all. At all. And I hadn't remembered the "thumbs up" or "thumbs down" part until she reminded me. I do now. Barely, but it is familiar. I must have been so frustrated when I had the breathing tube and couldn't speak and not knowing what the outcome had been after surgery #2 that I didn't want that to happen again if I came out surgery #3 with a breathing tube.

I remember mostly pain. I also remember that a day or two before Mother's Day, I was given a new mendication for nerve pain, I think. We are still not so sure what exactly happened, but I reacted negatively to it. Like I was talking NON-STOP, even through my sleep. I was having difficulty recognizing "real" time and "dream" time. I kept asking Ursula, "Am I awake or asleep?" or "Did I just make any sense?". Weird. I vividly recall a nurse telling me that they accidently gave me a double dose, but whatever the case, the medication was stopped either the night before or the morning of Mothers Day. Ursula worked like crazy to prepare me for a visit from my father and my kids after the ordeal. She says:

"On Mother's Day Erica came up with Dad, Ben and Aunt Mary. You were wide awake and looking forward to the family visit. You wanted to get cleaned up and look good for the family. You had taken that new medicine again before I left to get a coffee and some things for you at CVS. Upon my return you were in a deep sleep. It was difficult for you "to come to" when I tried to wake you. I immediately went to the nurse and told her that medicine had to be STOPPED as you were a complete zombie and not making any sense. I had all I could do to get you ready for the visit. I knew you didn't want to look like that and I knew I didn't want you to look like that. Especially not on Mother's Day! Didn't want the others to be stressed out. Tried to clean you up but they arrived earlier than expected. The nurse, aid and myself worked as quickly as possible while they waited outside. Finally they were able to enter. It was a precious moment. Bittersweet though.  I felt awful leaving you later that day, as I knew you felt comfortable and safe with me there. I felt the same way. But, I had to go back to work. It killed me. Actually, I hated to leave. Thank God you came to Mystic a few days later.

I do remember that Ursula left and my Aunt Mary came to be with me that day. I do remember one very awful night. No doubt, my Aunt Mary remembers quite well herself. I was in so much pain. SOOOOO much pain. The nurse, Diane Hicox, had always been wonderful to me. One of the few. I think I may have begged for more drugs, but she didn't budge. I just laid there and moaned and moaned and moaned. I must have driven my Aunt crazy. Diane came in with another nurse, a male. I can't remember his name for the life of me, but I liked him a lot. He was very, very strong so when they would adjust me or move me, it never hurt. I didn't wobble to and fro as with the female nurses. This guy was like a bull, and I could feel his brute strength and yet he was as gentle as a lamb. Sweet man. They must have tried to adjust my position ten times that night, but nothing helped. It was by far, the most pain. Finally, I knew that I had to settle down somehow. My Aunt Mary suggested I think of something else. As she and I laid there (I was in a private room to allow her to stay with me), I started a "story" in my head. I have no idea why (drugs! I'm telling you drugs make you WEIRD!) I thought of Princess Diana (like, why?) and I started on her life story. Or what I know of it! I clearly remember it started like this: "There once was a little girl named Diana, Princess of Wales. Diana was born to the Prince of Earl and Frances".........I couldn't remember the mother’s name. Hmmm......I mused out loud, "What was her name?". I asked Aunt Mary, "Are you listening?" and she said "Yes, but finish it soon! I'm tired!". I didn't know whether to laugh or cry. I continued my story, out loud mind you. She says I talked for hours. I don't know. I just remember that night as being one of the absolute worst of my life.

My next vivid memory was when I was told that they were moving me from the neurology ward in the Farr building back to the West Campus, Dr. Glazer's orthopedic ward!! Yeah! At last. I felt like I would be better off there as I was more familiar with the nurses there. I remember on that last day I had a Scottish nurse who seemed like quite the unfriendly brute at first, but as the day went on, we warmed up to her. I had a visit from the sweet PT, who's name I can't recall either! I was moved late afternoon/early evening, I believe.

We arrived and I felt really good about the move. We ordered dinner. Can I tell how SICK I was about that food. I think I had eaten everything that was offered and it was getting all too old. It almost made me sick to my stomach! I remember that Aunt Mary's hadn't arrived and we waited and she had to call and when it arrived, she couldn't even eat it. At that moment, she promised me that when I got to a rehab, she was going to get us a steak dinner worthy of eating!!! The nursing care was so disappointing. I had never had this particular nurse before, and she was not good! I recall my Aunt Mary saying, "I don't know why you were so excited to come here, it's not any better!” However, other than that night, any time I had spent in the West Campus had far exceeded being at Farr. Not saying much for the nursing care in that hospital, that's for sure. We finally went to sleep. Aunt Mary, for the first time, slept on a cot, instead of in the chairs in the room. Ursula had told her how uncomfortable the cots were and that the chairs were more comfortable, but Aunt Mary regretted listening to her and expressed how she had wished that she had asked for a cot earlier! The next morning, I awoke in excitement because I had been told the night before that PT would be coming in the morning with a walker and getting me up to walk! But instead I got another crabby nurse who wasn't all that helpful with anything who told me that she didn't know anything about PT! The next thing I know Dr. Glazer's PA came in and although I don't remember the conversation, I found him rude for the first time ever. My Aunt Mary said it's because I use too many words and take too long to ask a question! Well, she may be right, but toooooo damn bad, this is MY body, MY mind and suck it up!!! Then he came back with Dr. Glazer and I don't really remember anything about that conversation except my Aunt Mary commenting on his tie and her being upset because he walked away from her as she was speaking!! Boy, was she annoyed! I thought it was kind of funny, ya gotta know Dr. Glazer!

The next thing I know, the nurse returns and tells us I'm being discharged! Discharged??? I haven't even walked yet? Evidently, when insurance runs out, insurance runs out!! Oh the work involved in obtaining the ambulance etc. It was hectic. Aunt Mary was running around trying to get everything packed up and it was crazy. The ambulance arrived a little early and that was that.

The ambulance crew was great -wish I remembered their names, but I can't. Naturally. The guy drove with Aunt Mary up front and the young girl sat in the back with me. It was extraordinarily painful. But that sweet little young thing did her job well. She spoke with me the entire trip to Mystic. She did everything in her power to keep the conversation animated, all so to make the trip more bearable. Although I have no doubt that the driver was trying to be careful, in the back however, there were some curves that seemed pretty hairy as I lay on this little gurney. She would hop off her little seat and rush to my side and secure the gurney as best as possible to minimize any movement. Once she did even holler, "Slow down around the curves please!" and rolled her eyes at me. She was such a sweetie.

We arrived in Mystic! The story of my arrival is quite funny............

Here we go again........

April 26, 2010.
I was to return to Beth Israel for a 1:30 OR slot for surgery #2. Erica was helping me shower that morning with that very special (and smelly!) antibacterial soap - once again. Rinse and soap up. Shut water off and wait 3 minutes. Rinse and soap up again. Shut water off and wait 3 minutes. Rinse and soap up - final rinse. Hallelujah! Just as I was wiping off, my cell phone rang. Erica reluctantly handed it to me after telling me it was from Beth Israel. I answered and heard Dr. Glazer's receptionist, Linda's familiar voice. She said that they were wondering if I could come in any earlier because Dr. Glazer's first surgery of the day had been cancelled. I leaped with joy to just get in and get this over with! She asked if we could be there for 11:00AM and I said I would try and would be there as soon as we could. We immediately called Ursula and my friend Dee, who was also accompanying us that day. They were both ready, so it worked out great. I was already packed naturally (I mean, what did I really need?) so I quickly dressed and I was ready to go. More than ready.

So we all embarked on yet another trip to Beth Israel. Gosh, I could drive there with my eyes closed. I have been to that hospital more times than anyone should have too. Ursula drove my car up with the idea that Erica and Dee would drive it home that evening, as Ursula wouldn't be needing a car as she would be staying with me for a week. I don't remember arriving and I must confess, I don't really remember any of what I have typed already. Erica has had to feed me all of this information. I just have no recall of it. In fact, I am not going to be able to tell you very much about the following four weeks without information from others. I don't remember any of it, but  for tiny blips and with any luck, I sometimes have some recall when someone reminds me of something. It is very frightening.

I DO remember walking into the OR prep area. Erica just told me that I went in with Dee while she and Ursula went and parked the car. I could have sworn it was Erica that came in with me, but she assures me that it wasn't, and that it was in fact Dee who came with me. I remember them being all ready for me because people were bustling about and everything was moving very, very quickly. We barely got in and I was given my johnny and socks. I hadn't even completely undressed when suddenly some man came in and started explaining that he was the anesthesiologist. I verified that he was an attending and he confirmed (as I was looking at his name tag  for the info too!) that he was definitely an attending and NOT a resident. So here I was, half-naked, having a very serious conversation with the anesthesiologist. I also recall him explaining that because Dr. Glazer had ran into some difficulty with my previous surgery, they were all concerned about what would happen in this one AND because I was a "bleeder", there was always the chance that Dr. Glazer would have to close quickly and therefore I may awake while still intubated!! Gulp! WHAT?? I asked, "What are the chances?" and he said, "There is no way of telling. WHAT?? He continued, "If he runs into complications, we would want to keep you intubated in case we would have to get you back in very quickly overnight or something. You do realize that this is MAJOR, MAJOR surgery - very, very invasive?". Are you kidding me? I've been researching this for almost 7 freakin' years, I know more about Flatback Syndrome than he does, that I can assure you!! And I know very well just how invasive this was. But now, I admit - I was scared shitless. I DO NOT want to wake up with tubes down my throat!!! I signed up for spine surgery, not for tubes down my throat?? God, where are you?? Mom?!?!?!? Is anyone up there helping me?? Dear God. Wake up intubated???? The next thing I know, Dr. Glazer is letting himself in through the drawn curtain and now here I stood half- naked with two doctors! He didn't even close the curtain tightly, so now I am standing there for all the world to witness practically. Naturally, they act like it is nothing. Good thing I am not an overly modest person. He wanted to examine the abdomen incision and proceeded to explain what he would be doing (again) and his concerns about whether my dural membrane was going to create problems again and because "you sure do like to bleed". He promised me that he would do his very best to get this all done in one shot and then he turned and was gone. I finished getting into the johnny and laid on the gurney when Erica and Ursula apparently arrived and then POOF! Here was the anesthesiologist again with my cocktail! They asked Ursula, Erica and Dee to leave momentarily as it was getting crowded in that little area. Ok, now this was going a little TOO quickly (I DO remember this!), good thing they were giving me drugs now. It was just like bam, bam, bam.....one thing after another with not even a half a minute in between. In a split second they were telling me that this was it and.................I don't remember anything else. With help from Erica this morning, this is all I remember of that morning. And I wouldn't have remembered 3/4 of it without her help. Isn't this just pathetic? Why do I have no memory of this chunk of time in my life? I have approximately 8 weeks of time between March 22 and May 15 that I remember very, very little of and the memories that I do have are blurred! Some say it was the anesthesia, or maybe it was the Oxycontin, perhaps it was the Neurontin, or could it have been the horrendous pain?? Perhaps a combination of all? Or maybe it was self-protecting, a subconscious way of forgetting a horrible period of time? I guess I'll never really know why but the fact remains - I have completely lost 8 weeks of my mind and I can never get them back. I need to go cry. I'll be back...........

Ok, I'm back. I think I went into the OR about 11 AM on the dot. Dr. Glazer would be going in through the back now, attempting to remove my old Harrington rods and to finish the osteotomy at L4 and L5 that he had started on March 15 and to complete the laminectomies and thoracolumbar fusion, with instrumentation at L4-S1. Here we go.........

According to the OR notes, they intubated me, put on those lovely compression stockings with the blow-up boots and I was "gently transferred" into a prone position (face down) with my arms kept at 90* (to prevent injury). He then proceeded with his incision, which was made from T3 to sacrum. Now that is a LONG incision if I say so myself! In fact, it is 41" long (they measured it at Rehab). He pulled the skin apart and started at L5-S1 and foraminotomies were performed along the exiting S1 root on the left side. A foraminotomy is a decompression surgery that is performed to enlarge the passageway where a spinal nerve root exits the spinal canal. He states that there was a great deal of scar tissue to deal with accompanied by severe stenosis, which we already knew existed from my earlier Myelogram last September. Meanwhile, he did everything he could to protect the dural sac during this portion of the decompression, but..........he encountered yet another dural tear when he attempted to remove a fairly large ostephyte (bone spur), which was adherent (once again!) to the dura exactly where the bottom of the lower Harrington rod hooks had been placed back in 1974! Those damn Harrington rods!! He managed to expose the whole Harrington rods with an osteotome (instrument used for cutting bone) and he removed the prior fusion mass over the rods and then the rods were cut in half and these were then divided and then the hooks were removed on both rods. When the previous fusion mass had been burred to success, he then performed the complete laminectomies sequentially from L5-S2 on the left side. At the L4 level is where he encountered the dural tear due to the severe thinning of the dura and due to it's adherence to the lamina. The notes state that his attempt at closure of the tear, was "fraught with difficulty" given the limited structural integrity of the dura at that level, but he managed to patch the tear. He also noted that when he exposed the L2 nerve root there was evidence that the previous tear from the March surgery was still leaking from the ventral aspect of the sac! Yikes! He proceeded to pack that now as well. The neurosurgeon, who was also co-surgeon on Dr. Glazer's new "team", placed a lumbar drain in the right side of my back. Then Dr. Glazer went ahead and inserted the new pedicle screw instrumentation from L4-S1 bilaterally and then a rod was hand contoured (interesting, huh?) into appropriate lumbar lordosis and then attached using set caps at each level and they were placed in, gaining the level of correction he was seeking. Two more small rods were also placed to the previously-placed pedicle screws and tightened down with a torque wrench. Hmmm..........wonder if he got them from some car mechanic! I mean, a torque wrench?? Like I'm a car or something!!

Now the real trouble began - AGAIN! I started bleeding extensively despite multiple units of FFP (fresh frozen plasma), blood platelets and Cell Savers (Intraoperative Cell Salvage Machine). At that point, Dr. Glazer made the decision to halt the surgery immediately. He was concerned for my well-being. Well, later he told me, he was more accurately, gravely concerned about my life. He closed me up as fast as he could but he had to first use bone graft (that he obtained from the previous fusion mass) and repack from T3-S1 bilaterally (He certainly couldn't leave the space where he had just removed the old fusion empty!) and then FloSea (bovine packed gelatin) was used for the epidural hemostasis (stopping the flow of blood). He then closed me up with sutures inside and then the skin was closed with staples and sterile dressing.

At this point, he was VERY worried. Very worried. The decision was made to keep me intubated in the event I should start bleeding massively regardless of his attempt to pack me as well as he could and I was brought to the ICU. He, at some point (I don't remember exactly when), told me that he didn't sleep that night because he was so worried about me.

Meanwhile, Ursula, Erica and Dee were waiting word. Eight hours later, at around 7pm, Ursula received word from Dr. Glazer that the surgery was over. He was very upset that he had to close me up again without completely finishing, but he told her that it would have been too dangerous and that he would have to do finish sometime the following week. I had lost so much blood that I would need additional transfusions and that I would need to regain some strength in order for him to continue. He told her that with what he was able to complete up to this point was successful, but that he couldn't believe how bad it was "in there" and even with the MRI's, CT Scans and the myelogram, he had not been prepared for what he saw and encountered and that I should have had the surgery much sooner. Words he has repeated to me several times since. I guess I waited too long! Big shock, huh? He also stated that the most difficult part still lay ahead, even though it would be the smallest area he had left to work on.

The group was finally allowed into the ICU to see me at around 9-9:30 Pm. As Erica recalls, it was a very long and stressful day for all of them. Erica states that she was slightly discombobulated by seeing me with the ventilator still intact. She tells me that I looked beat up and my face was swollen with slightly black and blue eyes (common when being in a prone position for that many hours). She claims that I was very pale, almost white and my skin was very, very cold. She tells me that when she held my hand it was as if I were dead, it was so cold and limp. My eyes were swollen shut and she feels I was would have been unable to open them if I even tried, but she is sure that I did hear them. She tells me that she asked if I was in pain and I nodded, so she told the nurse who came and gave me more pain med. I have no recall of this. She asked if I was cold and I nodded, so she had the nurse get me some heated blankets. I have no recall of this either. Evidently I was coherent enough to hear and respond to their questions, but I do not remember and for this I am actually happy. She says she was scared to death. Little did she know, when I did awake enough to realize I was still intubated - I was too.

Pain, dehydration, pseudo-gout and NO memory!

All I really remember of the next FIVE weeks is PAIN. Within days of coming home, I received paperwork from Dr. Glazer's office stating that my next surgery was scheduled for April 26th! I was a tad upset, I mean he had said about two weeks, not five!!! I couldn't believe that I had to wait that long. Didn't anyone understand??? I needed to get this over with? Of course, I had no choice but to accept this, but I was angry. After speaking at length about this now with Dr. Glazer, I understand that it was in my best interest. He was VERY worried about me and being cautious. He needed to make sure that I regained some strength before he brought me back in, because he quietly speculated that more trouble lay ahead. He also needed time to think about his next steps, organize a "new team" and lay out a course of action. Of course, he did not share this with me at the time.

This will be a difficult post to write, because I have VERY little memory of these weeks, except pain. Literally. I will be talking about a not so lovely topic though! Constipation!! Ha! Ha! Well, it really wasn't funny at the time. As I am sure all of you are aware, narcotic's are notorious for being unbelievably constipating. Well, that is how I came home.

My memory "blips" of this time will probably go back and forth with time, because I had no sense of time and it all seemed chaotic. The only thing I had going for me was that I had arranged 24/7 care for 6 weeks, believing that I would be all set at that time, with the 2-stage surgeries planned for March 15 & 16 completed and I would be well on my way to recovery and everything would be behind me. The reason why that was in my favor was because as it turned out, I absolutely needed the help when "the" plan went awry! Seeing I went home on a Saturday worked out well, because naturally my family was here to help me. The following week was covered by my sister Ursula, who had taken a week's vacation to be with me. I never had to even ask Ursula, she just did it. She TOLD me she was taking the time and I so appreciated it. In fact, you will see as the post's continue, how indebted I am to her for all that she has done for me and continues to do. What would any of us do without family? Unfortunately, all I remember vividly is two things: pain and severe constipation. The surgical pain was naturally horrific, but expected. However, the terrible and almost unbearable sciatica pain that I experienced was totally UNexpected. It was constant, yet mild, UNLESS I had been up and was then getting back into bed. OMG - It was then that the nerves would raise hell in my left buttock and Ursula would use all her might and massage/rub/pound it until it subsided. The whole process would reduce me to tears each time.

Ben states his biggest recollection of my time at home during those five weeks is just my unrelentless moaning. He says it never stopped, even while I slept. My sister-in-law Laryl came and gave me pointers in regards to the constipation. I was on stool softeners, Benefiber, Metamucil, suppositories, laxatives and Milk of Magnesia with prune juice and NOTHING was working!! NOTHING! Until finally one night, when it all decided to work........ at once!!! Yikes!! And I started having a tendency to pass out! I do remember my friend and neighbor Trish being here and I had horrible diarrhea and I passed out in her arms and she caught me. She is a schoolteacher and former lifeguard, so she is well-trained with various medical crisis'. Thank God! Well, when everything we had used to help me decided to work all at the same time, I had a couple of days of basically just sitting on the commode (that was placed right next to my bed, because it got to the point that there was no way I could make it to the bathroom, so Ursula went and bought me a commode). During this period, and for a few days after, I became depleted of ALL energy, hence why I started passing out for brief moments. Between what I had been through, the sadness that enveloped me because of what lay ahead, the disappointment of how my "plan" had gone wrong, the relentless pain, being completely drugged AND the depletion of my system, I apparently ended up so seriously dehydrated that Erica made the decision that I needed to get to the ER. So I had come home on Saturday, and here it was just 2 days later (Monday) and off to a hospital I go again! Erica tells me that I was paler than pale, nothing was actually staying in me, I was running a high temp and I kept passing out. I don't remember the decision being made or the ride there, although I remember my Aunt Mary getting a wheelchair when we arrived, as I was so weak I could barely walk. I vaguely recall being at the ER, and them hooking me up to an IV for fluids, but that is all I remember.

Then, as my rheumotologist had feared might happen at some point during my ordeal, two later (Wednesday), my right knee had begun throbbing since the day before and as drugged and "out of it" as I was, I KNEW that I was in the throws of a pseudo-gout attack OR perhaps I even had a blood clot?? Once again, I was put in the car and off we headed to the ER again. After an ultrasound came back negative for a blood clot, blood work was considered normal, and after my sister Ursula made a call to Dr. Silversmith for me (rheumotologist), it was determined that what I was experiencing was most certainly a pseudo-gout attack in my right knee. Dr. Silversmith was certain this would happen to me as the risk of a pseudo-gout attack rises dramatically with dehydration, hence why she called and spoke with Dr. Glazer before the surgeries and the decision was made for me to stay on the medication she prescribes me, even though it is normally not acceptable. So with her AND Dr. Glazer's recommendation, I stayed on the med throughtout the whole ordeal. But she was right, in fact, she nailed that concern on the head very early on, even though I ended up with the attack anyway! Then again, I guess the question would be, how many attacks would I have possibly experienced IF I hadn't stayed on the medicine all of the time? One thing I do remember is the ER physician, Dr. Conlin suggesting that I have a steroid injection. Having had several steroid injections in the past anyway, I was completely in favor (anything to relieve the pain!), and when he told me who the orthopedic surgeon on call was, I also remember insisting that it would not be given by him!! If you have been reading my blog from the beginning you will know that there is a certain doctor in town that I am not that fond of, but Dr. Conlin did state that this physician's PA was willing to come and give the injection instead. Because I know this man somewhat, I agreed. He showed up, gave the injection and I soon returned home in better shape. Or so I am told. I don't really remember.

My sister Michele flew in the very next day (Thursday) with my niece Molly. Erica states that I was "crazy"  during this time and really mean. I have only two memories of Michele's visit. On Friday, she, Ursula and I embarked on a trip to Boston for a post-op visit. I don't know what I would have done without the two of them. Michele was vital in helping me be as comfortable as possible in the car, and when we arrived she stormed right back to the nurses area (like she worked there!) behind the waiting area and insisted that I could not wait and got me right in and on a bed!!! That's Michele, she is just like my mother! She marched right in, took charge and BOOM! That day I saw Jeff, Dr. Glazer's PA, and it was Michele that insisted my pain med's be increased. Due to the fact that she is a nurse, I think she was able to present herself in a manner that none of us could. I recall the ride home being awful and just painful and her unbuckling herself to be as close as possible to me, as I moaned and groaned in pain. She has some lower back and shoulder issues herself and no doubt, this was not very comfortable of a ride for her either. But regardless, once again, I am indebted to my sister Michele as well. I knew I was loved and perhaps her being a nurse like Laryl is, I found great comfort in their being "in charge". That evening, because I was so weak, they wouldn't even permit me to even get out of bed myself and simply get on the commode. No one trusted me because I was so weak, but because I felt bad that Michele was "on duty" after our long excursion to Boston that day, I just hated waking her. So I decided to just get on the commode myself. Seriously, it was literally right next to the bed! All I had to do was sit up, stand up, pivot, turn and sit on the commode. How dangerous could that be, right? Well, I don't know what happened next. Did I pass out? Did I collapse because I had no strength? All I know is that I simply fell, banging my head against the door. Michele, in true Michele fashion, came in and started screaming at me! "What the f*** are you doing? You were supposed to f****** call me to help you? What are you doing?? How stupid can you be??". I really do know that she just loves me and that I scared her, but at that time, she just pissed me off. Beside the fact, that I was petrified and in fear of what harm I may have caused myself. I was scared too, but even more so I was so mad at her for what I perceived as her being mean to me! Funny thing is, I probably would have reacted the same exact way if the situation were reversed!!! We are very much alike in some ways!! I would have been furious with her. I don't even think I spoke with her the rest of her time here!!!! I was mad at her for being - what I perceived at the time - as being cruel to me. She woke the whole house up I think! Obviously she loves me and I apparently scared the dickens out of her. Not wanting to end up back in the ER for a 3rd time that week, I didn't want her to know that I thought I had passed out again, so when she asked what happened, I simply told her that I tripped on the leg of the commode! She proceeded to make a midnight call to Dr. Glazer. Dr. Glazer being Dr. Glazer responded, "Beats me if she is okay, you're there, I'm here. Is she in pain? If she is in pain, get her to an ER. If not, she's probably okay!". This angered Michele, but you have to know Dr. Glazer. He truly isn't mean, he is just dry and to the point. The other memory I have is sitting with Molly and we had a "grown-up" talk and she spoke to me of her desire to become a nurse. It was sweet, and I actually remember the conversation well. I am told they left on Sunday morning. Easter Day. My Aunt Mary recently commented about Easter and I looked at her and thought, "Oh yeah, I guess was home for Easter. Easter?!?". Hmmm....then she said something about us having Prime Rib, Au Gratin potatoes and Asparagus. Really? I cautiously asked, "Did I eat dinner too?", she replied, "Yes, in fact you ASKED for the asparagus AND the Au Gratin potatoes!". Really? I have absolutely NO memory of that request OR sitting here with my family, Ursula and Aunt Mary, and dining on this meal. No memory. Whatsoever. It's so frightening.

The following week on April 5, my "scoli-friend" Dianne (from Atlanta, GA) came up to be with me for a week. I DO remember a bit about this time, but still not a lot. For which I feel terrible. Here is this person who extended her time to be with me and I don't remember very much of her being here. I remember her arriving, I remember our talks at night because she insisted on staying right in the room with me and sleeping on a small, leather loveseat in my room. She refused to sleep in Erica's bed, siting that she had come to be with and help me. As she and all of our scoli-friends always say, NO ONE can possibly understand what we have gone through since our adolescent years, but then to have to endure these revision surgeries that are so unique and unusual that unless you've been through it, no matter how hard you may try, the average "normal"  unfused person could not possibly ever understand. I have now learned that she is 100% correct! None of you can. You can support me and love me and help me, but you can't possibly understand what it is like to live like this. However, as I often remind myself, it could always be worse so I move on. Finally, one night I remember Erica and I giving Dianne no choice and we insisted she get a night's sleep in an actual bed. I also remember her cooking dinner one night. I don't remember WHAT it was, but I remember enjoying it! Ha! Ha! The story of how I "met" Dianne is interesting. Do you remember me telling you about the Yahoo! group that I joined soon after diagnosing myself with Flatback?? Well, Dianne is a member of the group and we had come to "know" each other, along with many others, online. So for several years, I "knew" Dianne, yet wouldn't know it if I passed her on the street. The founder of the group, Cam (from Nantucket) organized a Retreat in Boston in October of 2008. I went, with Erica and met Cam and several others from the group at Cheers at Fanuiel Hall. Dianne was there but was sitting at the opposite end as me with her husband. Although we said hello briefly, I didn't have an opportunity to spend any time with her. Then soon after, Cam organized a Retreat in NC in the spring of 2009 and I decided to attend. I flew out of Providence, met up with Cam and another gal (Martha from Chicago) in Charlotte and we continued on to a small airport in New Bern, NC where we met up with Dianne and rented a car and drove to the destination point of the Retreat. We went for five days and I just fell in love with Dianne. We just clicked and had such a good time together. We have stayed in touch ever since. When I was preparing for my surgeries, she told me that she was coming up to help me for a week! I was speechless! I tried to resist, I mean I didn't know her all that well, but she would take no for an answer. She has been such a big support and although I unfortunately don't remember all of her stay with me, I am grateful for what I do remember and even more grateful that she came to help me.

The third week I was home, I had sporadic and different help each day. My neighbor Dee, my Aunt Mary, and a friend from my jewelry store days, Glenda all pitched in. I do know that I was never, ever alone during this 5 week period. However, I have no specific memories of this week either. So scary.

The following week, Ben was on school vacation so he stayed home to care for me. Once again, I don't have one single memory of this time.

The last week before returning to Beth Israel for what I thought would be the last and final surgery, Ursula had taken ANOTHER week's vacation to care for me. As she had done previously, she just moved in and she cared for me 24/7 once again. I literally have absolutely NO memory of this week either.

I do remember my friend Sherry coming each Tuesday and Friday in the late afternoons, early evening. She kept me company, eased my pain, made me my dinner and fed me sometimes. I probably remember this because she has never missed a Friday since! Except for subsequent stays in the hospital, rehab or last Friday night due to Ben's HS graduation, she has not missed a Friday night visit. These aren't just "visits" but rather they last for hours and hours and I love our time together! We have been friends for 30 years, but we have now bonded so deeply that I love her like a sister. She has stood by me through my miscarriage, my mothers death, Ben's diagnosis and my spine saga. She is just always there. During the five week period, she also organzied a "cleaning frenzy" at my house, calling many friends and family in to help! Unbelievable. She has been a steady source of comfort. I am indebted to her, along with so many others. I am blessed with some very good friends and family.

So as you can see - I don't remember much at all. Just small tidbits. I worry about why. Everyone tells me it was because I was so heavily drugged on Oxycontin, Valium, AND in an awful lot of pain. I can only assume they are correct, but it still bothers me that I have lost such a big chunk of time in my life. Erica tells me often that I was just mean, mean, mean and nasty during these five weeks. She was frightened by it and Michele and my Aunt Mary had to keep explaining to her that it was the drugs. Ben states he wouldn't necessarily describe me as mean, but more "easily agitated" and "highly emotional". (I DO remember ALOT of crying!! I still do that and I did find out that really is a side effect of Oxycontin, so I guess I have an excuse!?!) But that's MY Ben - the diplomat. He chooses words more carefully than Erica!!! Ha! Ha! Erica is more like me, just speak the truth and blurt it out. Ben, is more like his father, and thinks about his words before he speaks and prefers to say I was just "easily agitated". Too cute. Or maybe it truly is just each their perception. Who knows? My dear friend Cindy commented that she also felt I was "easily agitated" too, but she knew it was the drugs and the pain.  She and I have been friends, almost as long as Sherry and I, and if I had been mean to her, she would have just let it roll of her shoulders. She is that kind of girl!! If anything, she probably would have told me to just knock it off!! Ha! Ha! Sherry says, "You weren't would I would classify as mean AT ALL. You were simply in awful pain and that is exactly how you acted". I guess it is all how you look at it. All I know is.......I simply don't remember. I don't remember certain people visiting, I don't remember most conversations, I just don't remember. So IF you are reading this and you feel that I was mean to you, I apologize, because chances are very high..........I just don't remember and I didn't mean it. I'm sorry.

I don't have any recall of heading back to Boston on April 26 for surgery #2 either. I don't remember the drive and I don't remember arriving at the hospital. I often wonder if memories will flood me at some point in the future or they are gone forever? I have had several people question why it bothers me. I can't explain it, it just does. My family and friends often remind me of things and I just don't remember. They explain that I, more often than not, seemed lucid and could carry on a conversation and yet I just don't remember these supposed conversations. I don't remember doing certain things either. It is discombobulating to have no memory of five whole weeks and unless you've ever experienced it, I suppose you wouldn't think it would matter. Someone else questioned me that perhaps it is a blessing, perhaps it is allowing me to block out more pain than I already recall? Whatever the reason, it is frightening. I will always be bothered by it. My apologies again to all for any "meanness" I may have inadvertantly and unknowingly presented. It certainly was not intended.

Graduation and Birthdays!!

Boy, we've been busy!! Ben graduated last Friday evening and I was able to go!!! What a feat! It was my goal and nothing was going to stand in my way. Granted I left halfway through, but I saw my son get his diploma. Now, today is Ben's 18th birthday today and tomorrow will be my 49th birthday.  Therefore I haven't been able to post about my surgeries for the past few days. I will try for tomorrow. You know, I've never minded birthdays, however I really hate the number 49!! I actually think I would prefer 50! In fact, I'm looking forward to it. I so wish it were June 2011 and this yucky and depressing part of recovery would be wayyyyyy behind me. Will post tomorrow or on Thursday.

Disappointment

Two days later on Wednesday morning, March 17, I awoke remembering that it was St. Patrick's Day. Bob would be leaving, and my wonderful sister-in-law Laryl, would be arriving. Laryl is a Nurse Practitioner here in Westerly and I love her dearly. She had offered to come and stay with me for a few days every time we spoke of "the" surgeries and she didn't let me down. As soon as I scheduled the surgeries, she put in for time off to be with me. (Now remember, I thought I was having 2 surgeries back-to-back Monday and Tuesday and then be going home approximately 10-14 days later, with it all behind me.) I distinctly remember that Wednesday morning as she rushed into the room with the exuberance and energy she seems to always carry! How could I NOT have noticed her entrance!! She had taken the train in and walked right over to Beth Israel. She didn't mind at all and figured it was her exercise for the day. She loves to exercise and she loves yoga. She even went for a walk one day, found a small college down the road with a sign for yoga classes. Oh, she was so excited. So she even got in her yoga while she was there with me!! She cracks me up! It was relatively early in the morning when she arrived, around 8 AM I think. She got up at the crack of dawn to catch an early train to be with me. I remember feeling a great relief to have her there, not only because I love her, but because she is a nurse. Pain was setting in well now, although I don't really think there was an actual increase of pain, but rather just that I was "waking up" and clarity was setting in, so I was just more aware of the constant pain. I bet I wore the button out on the pain pump!

Bob left to head back to Westerly and Laryl settled in. There is a hotel directly across the street and this is were Bob, Laryl and the kids would always stay. I actually remember the most details from this surgery versus the others. I recall that I had a nurse who actually remembered me from two years ago when I had my cervical spine fused by Dr. Glazer. Suddenly I can't remember her name at the moment, I want to say Lori? No, I don't think that is right. Is it? Hmmm.....Well, I guess it doesn't really matter. Boy, my lack of memory sure does scare me! Anyway, I thought that was cool and she was just a sweet thing and a good nurse, BUT........as I would later learn, no matter how good SOME nurses are, if others do their work for them, suddenly they scatter and leave you in the dust. Especially in this case, because I stupidly announced to everyone that Laryl is a nurse. In retrospect, I should have never done that. I originally thought that would improve my care, as if to let them know that they were being "watched", but instead they kind of seemed relieved, assuming that she could "help" them out or something! It was as if they figured she would just do their work for them!! ARGH! Unfortunately, as much as I liked Lori, or whatever her name was, she disappeared at times too. Granted, nurses are overworked - especially in big city hospitals and yes, there is a shortage, but come on......work ethic people, work ethic!! Laryl, being the nurse she is, took over for them a lot of the time, but she too was a little disappointed in my care. There were times she was just as frustrated as I and even though if there was something she could do for me, she told me, "Push the button for the nurse!". She was absolutely right. What am I paying all this money for?? Pretty soon we are going to have to bring our own help to hospitals!! Jeez! I was able to ignore the intermittent bad care for the most part because I loved having Laryl there watching over me. I felt safe. She bathed me and helped change the sheets. She understood what all the "lines" were. She understood all the medical lingo and was then explain it to me in layman's terms. What I remember the most is a LOT of laughs. That is something Laryl and I do all of the time. We just laugh. We had a ton of laughs in regard to the woman who was my room mate! What a doozy she was. Everytime she did or said something strange or started snoring VERY loudly, we would look at one another and just laugh. One day on one her "breaks" when I was sleeping, she came back with a wooden sign for me that said, "LAUGH", from the gift shop. I still have that sign right where I can see it now in the study where my hospital bed is. Every time I look at it, I chuckle. She is a very good nurse, a very good sister-in-law, but mostly a really good person who is always there for me. She is one of those people that I know I can always count on. Always.

As I said earlier, although Dr. Glazer patched the dural tears, I had to lay flat for a while. I believe it was on the 4th day, he allowed me to rise ever so slightly in the bed. If the patching hadn't worked, I would have had an immediate headache. I did not have one. Thank God, because if so, I would have had to remain flat for a few more days and if a headache persists each time they try to raise you, they have no choice but to go back in and re-patch! UGH! The next day I was allowed to raise the bed even higher - no problem! Yeah, the patches worked! At least something worked! One day, a man by the name of Bob came in to my room and explained that he was there to measure me for my brace. A very expensive brace at that! I have just recently found out that it costs $2554.40!! Yes, you are reading that correctly. $2554.40 and I get to wear it for three to four months. What does that break down to for each day?? Let's see.......about $28.00 a day for three months and $21.00 a day, if I have to wear it for four months. What a deal, huh?? He took all kinds of measurements, he was a nice man. He said he had some extensive spine surgery several years ago and found it so painful and the recovery lasted a few months and how he would never want to go through it again. He told me this with so much compassion and expressing great humanity for what I had gone through. When I explained I had more to go through, he was so emphathetic. He actually seemed sorrowful. He then told us how he goes back and sends all my information over the computer to some place (I can't remember, I want to say someplace in MA, even like Nantucket. No, it's not Nantucket, some obscure part of MA though. I just can't remember!) and they would make it up OVERNIGHT and he'd be back with it the next day!! Sure enough he came back the next day and he helped put the brace on me while I was laying down, with me "rolling" into it. (I've since learned that there is a much easier way!) And then I log rolled with his help and sat up. A PT arrived then thinking that it was going to be therapy time and at the exact same time my lunch was being delivered. So much action in the room however, this was the FIRST day I was on solids and you all know how I like my food! I looked at the PT and said, "YOU are going to have to come back later". Everyone laughed! Therapy over food?? I don't think so! I was dizzy and weak and thankfully Bob was quite strong. I could feel his strength when he held my arm and helped me to the chair. Laryl was so excited that I was standing upright and looked like she was so proud of me. Bob, the brace man, helped me into the chair. Everything about getting to the chair AND into the chair felt awkward and painful. It was not only the abdominal incision, but you must remember he did a lot of work in my lumbar region from L3-S1 and he scraped at my dural sheath AND played around with the nerves, to relief the stenosis. I felt the pain straight through, from front to back. Bob left and Laryl put my lunch tray on the table. I remember I had a vegetable panini sandwich that was very delicious. I was stuffed after eating just half, and Laryl enjoyed the other half. At last, real food instead of broth and jello. I HATE jello!! Always have, always will. Yuck! Laryl was SO excited that she insisted on taking my picture! I begged her not to, I mean can you imagine what my hair looked like after laying in bed for 5 days? She took the picture with her phone anyway and forwarded it to Erica! Erica was so happy to see "Mom" sitting up, so I guess it was worth it. (**See photo on sideline!!) I was only able to sit a few minutes longer, and Laryl helped me back to bed. I was exhausted. As I tried to sleep, all I could think about was how I was so, so disappointed at how this was unfolding. I was filled with so much anger and anxiety about having to go back in for surgery #2.

Dr. Glazer came in very early on Friday morning and said, "I'm ready to discharge you tomorrow. I want to send you to rehab instead of  sending you home". WHAT?? I calmly said, "Why? Because I'd rather go home?". He hesitated and said very quietly, as he so often does, "Because I don't trust you to be good, that's why!!". HUH?? I calmly said, "Why?" and he said, "Because I know you, Valerie. You lost a LOT of blood, besides the fact that I was really, really rough with your spine. You've been beat up a little. You NEED to strengthen up and take it very, very easy and I'm not so sure you will, if I send you home. I know what kind of person you are and I'm afraid that you're going to push yourself". Oh boy, I knew I had my work cut out for me. How was I going to sweet talk this guy and get home?? So.....I said, "Dr. Glazer, I am NOT going to do anything to jeopardize my spine. I WILL be good, I promise" and he said, "You promise? As in you'll shake my hand promise and look me in the eye and I say you swear to just rest?" and I said, "Yes". We shook hands and I said exactly what he asked me to. But the funny thing is, I meant it. I was scared. Yes, I am a VERY impatient woman, I don't always obey orders, however - this was different. This is my spine we are talking about. So when I promised him, I absolutely meant it. Although I'm not 100% positive he believed me.

So, I let everyone know that I was going home on Saturday! YEAH! He said he would let me know when the next surgery would be, he guessed about 2 weeks and explained he just needed to "get some people involved" and schedule an OR slot. So Erica and Ben came on Friday afternoon soon after Laryl left. She left in time to catch the 6PM train from Back Bay to get home in time to have dinner with her hubby. Her husband Michael, is Bob's step-brother and a really great guy too. I love him very much. I call him "Mikey". He hates it, but he has told me that he only allows a select few to call him that and I am one of them!! It's all because he knows that I say it with love and affection. Since the day I met him and Laryl back in 1981, I immediately liked them. Mikey is just one of those people anyone can sit down and have a conversation with. He is witty and boisterous and although he more than holds his end of a conversation, he has the quality of being a great listener as well. Sometimes those two things don't always go together, but they do with him. And he is not afraid to show his emotions - whether it is anger or sadness. I admire a man like that. He probably doesn't remember this, but after my mother died so suddenly in 1985, at her wake, even though I had only known him for 4 years and he had only met my mother once or twice, he came through the line at Gaffney-Dolan and when he got to me, he said nothing. He looked me in the eye and just hugged me. He just held me for what seemed like a long time and it meant the world to me. Most people, as I usually do, go through the line just shaking or holding your hand and quickly say how sorry they are and move on. Not Mikey. Although he hadn't lost a parent yet, he somehow felt my pain. He even held the line up for a minute. When he let me go, he said, "I wish I could say something to make it better but I can't." I started to cry and he just hugged me again before moving on. Then when I had my miscarriage two years later, Laryl happened to be working when I was admitted to the hospital for a D&C. No one even knew I was pregnant yet, so she was surprised to see me. She doesn't remember this, but I woke up crying in the recovery room and it was Laryl again who wiped away my tears. I arrived several days later to a picnic at my in-laws. No one said anything to me. No one else had the courage to acknowledge my pain, except Mikey. He came up to me, when no one was around, and said, "I'm so sorry Valerie" and hugged me again. He gently released me and said, "Want a hot dog?" and I said, "Sure" and he grilled one for me. That's Mikey. In a dignified and quiet way, he feels your pain. After we built our house, I had a small gathering - sort of like a house-warming, but not really. He is the ONLY person, that when he left, said, "Thank you so much for inviting us and sharing your house with us. That means alot to to me and I wish you years of happiness in your home. I'm honored that you invited Laryl and I". Huh? Who has those kind of manners anymore and is able to be so eloquent and kind? That's Mikey. I love him to pieces. I guess  you can probably tell. But the truth is that I am honored to have him AND Laryl in my life. They are very important to me.

Erica and Ben got settled in at the hotel and came bustling in. They helped me with my dinner and they each got a bite to eat themselves. I was so happy to see them. My children are my life and they make me so happy. I love spending time with them and to have them there felt so wonderful. I felt so safe surrounded by their love. The next morning, Dr. Glazer came in, checked the incision, said it looked good and reminded me that we had made a promise! He discharged me and I was soon being wheeled out. Erica and Ben went to get the car and the orderly helped me into the car. Can I say just one more time, THANK GOD, I have a SUV!! And a comfortable one at that. Erica drove and Ben sat in the back. Poor Ben, for the 1 1/2-2 hours it took us to get home, the poor kid was in charge of keeping me comfortable. Just when one pillow wasn't comfortable, I wanted another. First I wanted the seat up, then I wanted it reclined. Nope, that wasn't comfortable anymore, and I wanted back up. He never complained. Erica was trying to be so careful and avoid any potholes. She is a very good driver! Of course, I taught her!! I consider myself to be a good driver because I was taught by the best. My father. My father drove trucks of all kinds for years and he taught me to drive using my mirrors, instead of turning my head. I taught my kids the same way. He always said, "Learn to depend on your mirrors, because otherwise if you find yourself in a situation that you can't see anything behind you (like in trucks), you'll need to rely on your mirrors. When you are driving, always be looking in your mirrors. All three of them. To drive well, the only time you need to absolutely use your head is to check for blind spots. Other than that, use your mirrors!". And that is how I learned to drive. That is why I can back down a long, curvy driveway with no problem. That is why I can back into the spots that others will say, "You can't fit your car in there". Yes, I can. I completely trusted Erica to get me home safely. And that is exactly what she did.

The first thing I did was take off the brace and go to bed. Home at last. It felt so right to be here, but.....I couldn't forget that things hadn't gone according to plan and I had to wait now and go through more. Why do things like this ALWAYS happen to me?? Why doesn't anything ever go smoothly for me? Why does it seems the path is always rocky for me? WHY, WHY, WHY? I eventually tired of thinking about it, but as I finally drifted off to sleep, I was so very disappointed.

See newest photo in sideline!

March 15, 2010

     Well, let me just quickly say that as I give a quick synopsis of the past 3 months, you have to understand that I was heavily drugged and I actually have very little memory of most of it. That is the absolute truth. Oxycontin does that to you. Everyone can attest that even at the times I seemed very lucid TO THEM, I have no memory of. Someone will say, "Remember when.....?" and I say, "No" and they insist that I must remember, but I simply do not. I had great difficulty when I came home from rehab. Oh my goodness, I cried and cried, because I just couldn't remember anything but pain, but now I am accepting it. What other choice do I have anyway? The point of my telling you this is that there will be so much more that others could add to this part of my story, that there are some things that perhaps they wouldn't agree with, or as the case may be, just maybe I will surprise everyone with what I feel I experienced - but in the end, this is MY story and MY perception of MY experience.

    At 3:00 AM on March 15, I was still awake. I had stayed up all night getting "things done" off my to-do-list! I never was able to cross everything off. Oh well. I was doing things without any dread or fear, but maybe I was a little apprehensive? On second thought, maybe I was a little scared. But more scared of what lay ahead. Maybe I had a sense of trouble deep-down that I didn't want to come to terms with. If I had only known then what I was actually about to embark on, I definitely would have backed out!! This decision to move ahead was not made easily or quickly as you all know. It took me 6 years to make this move and here I was. I jumped in the shower and washed myself with a special anti-bacterial soap that I was told I had to use and by 4:15, I had said my goodbyes to Erica and Ben and we were on on our way. The ride was miserable as it was raining very hard and it was very windy. I settled in and immediately put in my earbuds from my iPod and I truly relaxed listening to various meditation's. We arrived and I registered and was soon brought upstairs. No sooner had I sat, they called me in. Before long, I was in a johnny and meeting my OR nurses and anesthesiologists. They also called Bob in and he sat with me as everyone was bustling around us. when they showed up, I insisted that the attending anesthesiologist, NOT the resident, do my intubation or any other work on me in the OR, but agreed that she could put it my lines before I was brought in. I remembered their names for the longest time and now at this moment, I can't recall them. This happens alot. I swear anesthesia kills brain cells and since I was under anesthesia in March, April AND May, I worry if my memory will ever be the same. Dr. Campbell came in too and explained that he would be working along with Dr. Glazer. Dr. Campbell is a vascular surgeon and he would be responsible for opening me up and moving all of my abdominal organs aside for Dr. Glazer to reach my spine. Within minutes of him leaving, Dr. Glazer appeared and he was calm and carefree and I was for the most part too. He had just come home the night before from a conference in New Orleans and he gave me some green beads that I put on! He had beads for everyone! It was a strange moment because it was as if I were there and yet it was as if I were watching it from afar. Everyone was laughing and working and talking and for a minute it was as if I wasn't really there. Their voices were distant, along with the laughter and I was suddenly filled with dread. I wanted to get up and run. Then I realized how foolish I was being and found the strength to ignore what had just happened and "came back". Being perfectly on time and afterI had signed all my papers practically giving my life over to them, agreeing to all that could go wrong and that I wouldn't sue them, stating my name and date of birth more times than I can recall, I was finally told it was time for my "cocktail". Thank God - let's just get this show on the road!I had told the anesthesiologist that I didn't want to be awake when I was brought into the OR. I hate that. I told him of when I had my knee's done last year that the anesthesiologist gave me the equivalent of a very large glass of Pinot Noir and he laughed and said he would make sure I had a glassful!. So at last, he reappeared and said, "Here's your wine. You better say goodbye to your husband right now because you won't remember anything in about 1 minute". So Bob kissed me and I was wheeled off. I don't remember anything after that. I found out after that what they give you usually is Versed. That is the "date-rape drug". Interesting............

I woke up in recovery and as what usually happens to me, I was suddenly freezing and shaking. Anesthesia does that to me. They explained that it happens in about 40% of people. That made me feel better because I always wondered about that. I'm actually amazed right now that I remember that moment of asking the nurse that question. Hmmm. I wasn't in any real pain but yet I felt uncomfortable. Several nurses kept walking by saying, "Breath Valerie, Breath". I was breathing, wasn't I? Every time I started to dose off, one of them would literally shout, "Breath Valerie, breath!". OK, now I was getting pissed!! All I wanted to do was go back to sleep. Well, evidently, my breath would decline rapidly as soon as I would go to sleep. So I looked at the monitor and I started breathing heavily and I saw the number rise to 40-something and they said, "Good job, keep it up" and I thought, "Are you kidding me?? If I breath this deeply constantly, I am going to hyper-ventilate AND I can't sleep like this!". But I said nothing and kept watching the monitor. Every time I would feel myself dosing off, I would find the number down in the teens and before I could even start  my deep breathing, there would come the shout , "Breath Valerie, breath!!". Ugh!! What the heck? But I must admit, now I was afraid to dose off for fear that I would die. I asked the nurse why this was happening and she said it was apnea!! I said, "Like sleep apnea from snoring? Am I snoring, is that the problem?" and she said, "No, it is apnea from anesthesia. The meds they give you decreases your breathing rate and it isn't all that uncommon that it takes awhile for the body to rid of it and to help that happen faster we increase your oxygen, that's why you have the oxygen cadula (the thing that is in your nose tto receive oxygen)". Now, I was wide awake, but so tired. I couldn't help but chastise myself for having stayed up all night and I remember wondering WHY the heck would Michael Jackson do this?? Weirdo! If you will recall, this was surgery #1, where they entered through my abdomen. After experiencing a C-Section when I had Ben, I was familiar with the abdomen pain I would have. It really was similar except that all of a sudden my sciatica was hurting and it quickly became very painful. I told the nurse and suddenly Dr. Glazer was there and she was asking him what he wanted me to have and I heard him say to give me Valium. Valium? I thought,, "Does he not believe that I have sciatica pain and that I'm just crazy nervous and scared?", but I soon learned that Valium was originally created as a block for nerve pain!! Duh! And only later was it realized that is was also helpful for mental nerves as well!! The things you learn in hospitals! Then he walked up to the bed and I saw his face and he actually looked sad. Please recall that I have come to know this man a little bit and I instantly knew that something was wrong. I just looked at him, too scared to ask what had gone wrong. He held my hand, leaned down and said, "Valerie, it didn't go as well as I was hoping. We ran into some trouble and you lost a lot of blood. We had to give you a 3 transfusions in the OR". He waited a minute and continued. "We came across something like I've never seen before. Your dura, which is usually sort of draped over the spine, was actually ADHERED to the spine, which made it difficult to get to where I needed to be. We accomplished what we could, but at some point we realized that if we didn't close you up, we could have problems and you know I would never do anything to compromise you". I was just laying there trying to digest what he was saying, which is not an easy accomplishment when on heavy narcotics. I said, "What does all of this mean? What did you actually do?". He said that he was able to complete the partial vertebrectomy at L3, L4 and L5, he fused from L2-S1 using 2 spacers. He also said that although he used mostly BMP (Bone Morphogenic Protein, which is the "fake" bone used from cadavers), he was able to harvest a bit of my own bone (allograft) taken from a little of my illiac crest area where they obtained bone back in 1974. He went on to explain that the disc spaces at L4 and L5-S1 were completely collapsed, so he removed the discs and he performed the vertebrectomy with spacer at L4 and L5 and then he inserted another spacer at L5-S1. Then he went ahead and performed another partial vertebrectomy at L3. It was at this point that because of my dural membrane being a major issue, a dural tear was encountered. A large one. Dural tears in these type of spinal revisions are NOT all that uncommon. They are actually very common, but evidently mine was huge. At this point I was losing blood like crazy and so they quickly packed the tear. He commented that my dura was "friable and adherent" to the posterior margin of the vertebrae. So he rapidly moved on to the fusion aspect, and that time harvesting my own bone as stated above and mixed with the BMP and packed. With that all done, he sutured me up as quick as possible after X-rays revealed accurate placement of the spacers and fusion. I was then brought to recovery and here we were.

I was still confused though. What did all of this mean? He explained that scraping at the dura to reach the spine is dangerous and unlike what he usually encounters. He said because of the large dural tear that I would have to lay completely flat for 5 days and he was not going to proceed with surgery #2 the next day as planned. Instead I would stay about a week and go home to regain strength. He said he would be jeopardizing my life if he continued the next day. He also said he needed time to "think" about his next moves and how he was going to proceed from this point. He said because he feared that if my entire spine was like this he was going to have to "form a new team" and "strategize" their next moves. I felt dread. Why did I agree to this? I wanted to back out, but like Dr. Glazer, I knew I couldn't. We had to move forward because we had no other choice. He certainly couldn't leave me like that without completing the entire work. His last words to me were to just rest and sleep. He then turned and left and my mind started winding. OMG - EVERYTHING, and I mean EVERYTHING was now messed up! What did he mean? How long was I going home for? I timed this so that I would be able to attend Ben's graduation in June without using a brace. I timed this so that I could enjoy the summer, even though I wouldn't be able to do much. I planned this so I could go back to work by Labor Day. I spent YEARS planning this!!! How dare it get messed up. And more importantly, HOW dangerous was this going to be for him to go back in? Wait a minute.....my mind was so confused and I was scared and I was mad and I was in pain. It was all too much to take in at the time. Suddenly I was tired and the nurse was starting yet another blood transfusion. She was such a kind nurse and I told her I was scared and so tired and that I couldn't go back to sleep because I was afraid I was going to die because the last time they screamed for me to breath I saw the monitor had gone down to 9. She didn't say much except she kept gently reminding me to breath every time I started to dose and to push "the button" for pain. I did remember that. I pushed and pushed and pushed. Every time they woke me with "Breath Valerie, breath!", I pushed that button.

I lay there afraid and in some sort of pain I couldn't describe. I finally did fall asleep and the next thing I knew was that I was being told that I was being moved to a room. I think I spent several hours in the ICU/recovery. I don't really remember going to my room or arriving. I remember Bob being there at some point, but the next couple of days I have no recollection of, except for tiny moments. Little blips. It is a blur and besides, when I did awake, I just wanted to go back to sleep and make believe that this really wasn't happening. Everything was all messed up. All of my planning and it was kaput!! Just like that. I couldn't believe it was happening. But it was.