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.

  

Oops....

Ok my friends, the day is slowly disappearing. I must divulge - I overdid it yesterday and ended the day in pain. You know, in bed with additional pain meds. So I learned a lesson - this really is a slow recovery and I need to slow down! It's just so hard. So I have made a GREAT attempt to keep today really slow and easy and that means minimizing the sitting. So my posting that will bring us back to March 15 will have to wait until tomorrow, so that I can prove to everyone that I really am serious about taking good care of myself. Why doesn't anyone believe me? I'm going to prove all you non-believers wrong!! So now I will go rest again. So tune in tomorrow......?

Staying Positive

As most of  you know, I have been to hell and back. I can say I have endured a ride that I could never have imagined. NEVER! You know what they say about making plans, right? Boy, did everything get a little screwed up or what? I am actually typing this as I head to my 3PM afternoon rest/nap (may just be a nap today since it is yucky and cold out!) but wanted to write to ask for your patience with me. I am feeling a little better now, a little stronger and am ready to re-start the blog!! I will send out a re-invite to all with the click of a button over the weekend and plan on writing on Monday (June 14). I'm excited and since I can now sit for a full 20 minute (YEAH!) I think I am ready to start writing. I truly hope all of you can find the time to start reading again - not only because I love doing it, but because of all of the positive reinforcement I have received from all of you. Let me take this time to say THANK YOU to all of you that have been there for me. The support and love has been so appreciated. I felt the love the whole way through, even in the most difficult of times. So......I guess I'll talk to you on Monday!!!
Love,
Valerie

I survived and I am back!!!!!!

Wow! What a ride- that's about all I can say! It has been a journey that I hadn't quite expected. I will go into much detail as I recover and regain my strength, which will no doubt take many, many months. I am in a rehab facility as I write this, so please give me time. I really need not only your love and support, but your patience. I'm not sure if anyone is even reading this any longer. If you are, can you please let me know, because if not, there is no sense for me to continue. So please let me know. Thank for all of your prayers and everything. I felt it all.
Much love,
Valerie

The Big Day is Here!

Well, I do apologize as I never did post after the last time on Thursday. Somehow, the time just escaped me and now it is about 1:30 AM on "the" BIG DAY! I've decided to give up on the sleep possibility since I needed to rise at 3AM anyway! I'll have to catnap on the way to Boston or just take solace in knowing that I'll be "sleeping" alot in the next 2 days! I am telling you, there is a HUGE amount of planning and preparation into these kinds of surgeries!! Yikes, I'm exhausted. I have just a couple of things left to do on my "to-do" list and then I guess I'll shower again and just be ready to leave. I say shower "again" as I was given strict instruction that I had to shower with a special antibiotic soap. So I had to go to the pharmacy to get it and the instructions were that I was to shower on Sunday evening with this soap and then again on Monday morning before I left for Boston. You put it on, wait 3 minutes, put it on again, and wait another 3 minutes, then rinse - all the while not letting the water touch your skin. No lotions or powders afterwards. Do you know how darn cold it gets while you wait for 3 minutes to pass? I was freezing. And now I have to do it again in about an hour or so!! Ugh! I don't know why I'm complaining, I suppose it's a piece of cake compared to what I'm going to have to go through in the next few months.


Seriously, because I do have a couple of things left to do, I must sign off so I don't leave the house with them undone. All of you that know me well know that I can be a "bit" of a control freak!! I wouldn't feel okay about things if I left without doing everything that I wanted to do. I did wake up apprehensive today and a little scared. Please know that I am NOT scared of the surgeries' per se, more what will come after. I have every bit of faith in my surgeon and I also know that it is all in God's hands anyway. I feel pretty confident about that aspect, the recovery? Well, that's the part that has me a little wobbly! But I'm strong, I'm healthy and I'll probably be fine and with any luck, I'll be blogging again in no time, and you'll see (or should I say read) it for yourselves.

I went to Mass today and had my St. Gemma medal blessed and received an Anointing of the Sick. That is how I started my day and it felt very good. My dear sweet friend and neighbor sent me positive energy through Reiki. She has been doing Reiki on me for years, originally starting due to my back pain. She has been with me all the way, so supportive and so giving of herself. I love her dearly too. I can't believe that so many are doing such beautiful and selfless things for me. I called my other neighbors Tom and Trish over some ridiculous anxiety attack over iPods and MP3 players. They are both so patient and kind as well. Poor Tom, I am forever pestering him about computer problems. But that is the price he has to pay for being THE "geek squad" of our street since he is a technology "master". I couldn't even OWN a computer without him!! My Aunt Mary was sweet enough to help me do some menial paperwork yesterday, as I walked in her house with an armful of paper and even helped me reorganize my "to-do" list to a more reasonable existence! I've touched base, even if just for a few minutes this weekend with my closest friends, whether it be in person or on the phone. That was heart-warming too. I talked to my Dad yesterday and I know he hates that I have to go through this. I really do feel the support and love of so many. It is an out of space sort of feeling that I have been having for the past couple of days. A whirlwind. A complete whirlwind. But in less than 6 hours, I'll be "resting" and Dr. Glazer can do the worrying and the work, with God and the angels (my mother being one of them!) watching over him giving him the strength, courage and determination to straighten my spine. Then God and those same angels, with the prayers of all of you will then give ME the same strength, courage and determination to heal and endure the recovery that lies ahead. Till I can blog again, good night by dear, dear family and friends. I will blog again as soon as I possibly can. I am already anxious for that day. Please continue to read - it means the world to me.

St. Gemma

By the way, I know that many of you are looking for me to post the prayer to St. Gemma. I have put it in the sideline so that it will be easier for you to get to as the days go by (rather than trying to find it in a particular post, if I did it that way). So, feel free to start praying anytime you want!! Although at this point, I should probably find the Patron Saint of headcolds and I should be praying to him or her instead...................

I'm back!!!!!!!!!!!

Hi everyone - I'm back from DC! With a head cold! Which is NOT good news. I'm a little concerned and am praying that it gets better with each hour and not worse - because if that happens, the surgery will most likely have to be rescheduled!! I haven't been sick - even once - this winter and NOW I get sick! Maybe traveling wasn't the best idea right before surgery. Too late now, woulda, coulda, shoulda, right? I bought a Neti pot yesterday on my way home and I am going to try it in a little bit. For all of you that don't know, a Neti pot is a way to do a "nasal wash". Actually the first time that I ever heard of a Neti pot was when I had gone to the emergency room when I was ultimately diagnosed and later hospitalized with Mono, remember that? Well, when I had gone to the ER in the early morning hours, the doctor actually said to me, "Do you know what a Neti pot is?" and I said, "No" and he said, "I really think you would benefit from a nasal washing" and he went on to explain how I could still do it without a traditional pot. I was so sick, I just ignored him and also because I had no intention of putting any water up my nostrils!! Gross! Anyway, in the passing years as I have become more interested in more "natural" healing methods, I have often read of the Neti pot and know several people who use one regularly. In fact, in the past few months, I have actually picked up one in the store, but always put it back on the shelf, figuring why bother spending the money. So last night, when Erica picked me up from the airport, we stopped at Whole Foods in Cranston and I finally bought a Neti pot!!

I have a guy here today cleaning my carpets, so I will give it a try right after he leaves. I opened the box up a little earlier and was ready to give it a try, in desperation to "clean" out my nasal passages of this insidious little infection that is trying to spread through my body, but decided that I should try it out AFTER the carpet cleaner leaves! I suddenly thought that if he walked in and saw me with this little pot (that resembles a mini watering can!) with my head tilted, putting water up my nose, he may think I am a little crazy!! So in order to preserve my reputation as being a relatively sane person, I'll refrain from doing the Neti pot until he carpet man leaves!!

I slept well last night, albeit with the help of a couple of Tylenol PM's! I slept very well while I was away and am thankful for that. My leg (mostly my left one) has been still giving me issues with sporadic spasms, which mostly appear at night when I lay down. Unfortunately, the sensation has reared its ugly head during the day a few times. I don't like that. Some nights (like last night) it is very mild and I am able to almost ignore it and go to sleep. Other nights it is very bothersome and I am awake for hours, thrashing around. I have found that a Percocet helps a bit, not 100%, but enough so that I can go to sleep eventually. That is a double-edged sword though, because as I've mentioned before, narcotics generally cause me insomnia. So unfortunately, there are nights that I have to choose between leg spasms or insomnia. Great choice, huh?

I was finally able to speak with Dr. Glazer last Saturday. He called when I was in a workshop at the conference and left a voicemail with his personal cell phone number, telling me to feel free to call him back so that we didn't continue to play phone tag. I reached him later that afternoon. As I started to ask him questions, I could hear his small children in the background, "Daddy" and him saying "Shhh...” - I thought that was sweet. It was a reminder that although he is this world-renowned spine surgeon, he is first just a man ~ a husband and a father. I know that he has three young children and I'm pretty certain that the oldest isn't even 6 or 7 yet - so in the little time he probably spends at home, his children must cloister around him and they all must cherish those moments. So once again, here I am about to be sliced open with a load of questions, and yet I hesitate, picking and choosing which questions to ask so that I don't take up too much of his time away from his children. I guess that in that moment, I figured that his kids need him even more that I do.

Anyway, I asked 7 of the 9 questions that I had and we were off the phone in 4 1/2 minutes!! Ha! Ha! A true surgeon nonetheless - straightforward and to the point. You ask a question and you get an answer and then.......next question! Don't get me wrong, with Dr. Glazer you never get the feeling that he is rushing you, it is just that he is a typical surgeon - blunt. They don't have a lot of use for idle conversation. Funny group they are. So I asked if I could get my Harrington Rods back. Or any part of them, I should say. Dr. Glazer is not even sure he is taking them out completely. A lot of times, because so much time has passed from the time of implementation to revision, they can become deeply embedded in bone making it very dangerous to try to remove. More often than not, they take out parts of the rods, the parts that come out relatively easily and then actually use the parts that are embedded as an "anchor" for the new instrumentation. Regardless, I told him that I want back whatever he can give me. He said that they generally send it on to Pathology (weird huh? I forgot to ask why? Perhaps as part of a study?) so I have to fill out paperwork when I arrive on Monday morning. I also mentioned the leg pains and spasms that I am experiencing more and more and he said without doubt, he is certain that it is related to nerve impingement due to the severe lumbar stenosis that I have. He commented that he is opting to do the anterior (front of body) part of my revision for this reason alone. He said that doing anterior, along with posterior, will enable him to better "open" up this area and "really get in there" to "clean it up" and also to gain even better correction for me. I also inquired about anesthesia and mentioned that I do indeed have slight apprehension of being intubated regularly again, especially along with knowing that it will occur two days in a row and especially on the second day, for many, many hours. He said that although he understands my apprehension, he thinks it may be unwarranted because the paralyzed vocal cord did heal as expected. He said that they may decide to do it "fiber optically" versus an endotracheal tube, as is most often used. He said "we" will discuss it with the anesthesiologists the morning of the first surgery. I then proceeded to ask several other questions that will no doubt just bore you all to tears so I won't bother to explain, but then the call was over. Another "check" off the list of things to do!

So today, I am doing laundry (which there is MASSIVE amounts to be done!) and completing some paper work and then of course, I am going to clean about my nasal passages with my Neti pot! And I am also going to lay low and nap. Because if these surgeries end up having to be rescheduled, you all might end up having to visit me in a psychiatric hospital!! And I'm not kidding!!! Seriously.

Acceptance

           The Dalai Lama says, "When you lose, don't lose the lesson"

I guess that I may have lost out on a healthy spine, but I truly hope that I haven't or won't lose the lesson. The truth of the matter is that my scoliosis, has no doubt, made me the woman I am today.

So, here I am just 10 days away!! I'm feeling pretty good. I have prepared to the best of my ability. I trust my surgeon and his very skilled hands. I am humbled by the love and support that I have received from so many. I envision myself being pain free and walking straight. I am eating healthily. I am meditating and praying. There is not much else I can do. I really have given it up to Dr. Glazer and God.

Dr. Glazer has magical hands, hands that he has reminded me that he feels great responsibility with. He has often said, "It is my goal to improve the quality of their lives, never make them worse and I take that very seriously". I trust his hands. In fact, let’s face it; I trust them with my life. God? Well, I give it all to Him to handle. He is the man in charge after all!!

I will say this. These surgeries have forced me to confront alot in my life. What I like about it, what I don't. What I want to change, what I don't. What I like about myself and what I don't. Who is important to me and who is not. Who I know have my back (no pun intended!!) and who doesn't. More importantly, for reasons that I can't explain, I have easily come to terms with it all and accept it. All the good and all the bad. Someone told me recently that if you want things to be different, perhaps the answer is to become different yourself. Acceptance. It, for me, means finally coming to terms with WHAT IS, instead of what I wish for. Choices. And then Acceptance. I have Scoliosis, and I wish I didn't. I didn't choose it, but I must accept it. But I truly think that I am coming to a certain peace about it, all these years later. As Helen Keller once said, "I do not want the peace that passeth understanding. I want the understanding which bringeth peace." I love wisdom quotes. I love anything that makes us as human beings, stop in our tracks and just "think". I have been told that I am quite philosophical about so many of life's topics. Some people have even pointed a finger exclaiming their anger with me saying that they think I am self-righteous or that I think I am always right. In fact, that is not true at all. In fact, I think I am often wrong. I am just a human being interested in the human mind and I love to bring people to the point of "uncomfortable" when delving into their minds. Growth begins when we accept our weaknesses'. It is only then that we really find out important things about ourselves. My mother once said that the person we all lie most often to is ourselves. She was right. We "pretend" to assert all of kinds of things in the company of others or even to our own image in the mirror. Yet the truth is that unless you "test" these assertions on your body or in your intuitional consciousness (which we all possess), look in the mirror and really look at what we see, only then can we accept that if what we asserted is in fact true. Pretty deep, huh? If you understand that, then you know how to delve deep. If you don't, start delving!!! Calm the mind and let it be still. All kinds of thoughts will come through. Acknowledge them and accept them!

I am leaving tomorrow for a business trip to DC. I will return next Wednesday evening. I will attempt at that point to post on the blog each day until I leave for Boston. Right now, I must go pack. I'm slightly apprehensive about struggling through the airport, the plane and the walking I will have to endure. I am traveling with my dear co-worker and friend Paula. She is the kind of friend that I know that I can rely on and not feel bad. She very often instinctively knows when I need a helping hand before I even ask for it. I know that even if I find the trip painful, I will have many a laugh and tons of fun with Paula. I'm thinking that this trip is really a gift and the best use of my time right now.

Shout out a prayer for my 92 year old Aunt Sarah. She fell again! I believe that she is in surgery as I type this. Thank you to Diane and Jill, who took me out to dinner last Friday evening. It was relaxing and a lovely way to unwind. They too are two people who I know are there for me, no matter what. It is not only humbling, but heart-warming. We all need that in life. Actually, I feel quite selfish lately. I'm finding that I just can't "give" anything right now. It's as if I have no control, as if my mind and body are taking over and conserving everything just for me. I've chosen not to fight it. If I anger, hurt, or frustrate any of you - please forgive me. It is not my intent. I love each and every one of you dearly. It is just, as I stated earlier, an acceptance on my part of being kind to myself for once and focusing on just me so that I am prepared for this grueling recovery. I am learning to accept me and I ask you lovingly to just accept me as well. I'm leaving it all up to God. Acceptance. Acceptance is God's novel. Let's let him write it.

      "People are like stained glass windows: they sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light within."