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.