Friday, April 27, 2007

Aly is Okay!

Hey friends-

This is Sachi, guest blogging for my mom, just to update everyone and let them know that the surgery went well. Thursday, I was nervous all day. I even told my tutorial leader that I might have to answer the phone during class if my stepdad called. Sure enough, at around 2:45, the phone rang (thankfully, I had changed my normal Bon Jovi ringtone to vibrate) and Brian was on the other end. The doctor had just come out to tell him that my mom was okay, making jokes as soon as she came out from the anesthesia. I didn't really get to talk to her at all that day because doctors kept coming in to the room and telling Brian to put away the cell phone. Those nosy doctors! Grandma sent me a text message saying she had passed all her tests- how many fingers, what year it was, etc. After years of administering tests, it's good to know she can take them as well, eh?

Today, I got in from Boston and went straight to the hospital. The doctors wouldn't let me bring flowers in because some patients have allergies (again with the doctors and their rules, who do they think they are? Kidding!) We watched Grey's Anatomy and my mom seemed great, telling me about Wednesday's South Park episode and the woman next to her and whatnot. It was really good to see her although I wasn't allowed to hug or kiss her. Her hair is peeking up from the top of her bandages like Erykah Badu... cute!

Hopefully, she will be able to blog again for y'all again soon. Get well soon, Mom!


Wednesday, April 25, 2007

Post surgery anticipation

From the Angioma Allaince website:

"Brain injury of any sort, including that from cavernous malformations, can cause a variety of cognitive impairments. For example, after a bleed or surgery, individuals often complain of difficulty with attention, short term memory, and multi-tasking even if they have no visible physical deficits....Certain medications may cause strange behavior and/or side-effects including aggressive behavior, confusion, hallucinations, and extreme hot and cold flashes."

After I shared all of this with Brian, he said, "How are we going to tell the difference?" It was a joke of course.

Check out this link for post-surgry emotional support for when i get home. It totally confirms why writing this blog has been so helpful to me.

I hate to admit it, but I am a stubborn and independent person. It will be difficult for me to ask for help after I come home from the hospital. Thank you to my close friends who have been reading this and have offered to help. I guess will have to take you up on it.

Tomorrow is the surgery!

I have been busy lately. Many phone calls, visits, and emails. The doctor finally said to limit immediate contact with people because if I were to have a fever, they would have to cancel the surgery. That would suck! I am mentally prepared.

At first my diagnosis felt like a death sentence. Everything happened so quickly and we had no idea what was going on. Physically I felt so lousy and weird and it seemed to be getting worse every day. As soon as Brian went with me to the first doctor he was reassured that everything would be fine. He understood the problem, the risks, and the surgery. He is better with logical, probability type stuff than I am. Being an emotional, reactionary, sensitve person, I was just scared. And then after scared, I became resigned to fate. Being afraid, I scared Sachi. I remember her pediatrician saying to me once, "Did you cry in front of your daughter? You should never let her see you do that."

Of all of the traits I may or may not have instilled in my daughter, the high degree of emotionality is one I sometimes wish I could take back. We are similar in many ways besides this. We are both very introspective and self-analytical. We have great conversations about what we are thinking or really cool things we just realized. Sachi and I also both love a good laugh. There was a time when Sachi always wanted to be laughing and she would come over to me and demand to be tickled. When I did, she would fight me off. She was an adolescent and nearly my size so wrestling with her was strenuous and sometimes painful. She just needed to laugh, to feel something strong, stronger than whatever she was feeling.

I think Sachi was born passionate. It's certainly possible she inherited from me but I saw it in her long before nurture could have possibly kicked in. One of the first few times I took her out after she was born, I heard another newborn crying. Sachi was comfortably asleep in my snuggly and even if she wasn't, the sound triggered no motherly instincts or lactation response. It was a delicate plea, a soft request, a minor cry of discomfort or hunger. Sachi was born with an enormous booming cry that commanded attention. I remember thinking if Sachi cried like that baby did, I think I could put her down. But she didn't, she wailed. I suppose it is possible she was just loud but time has shown that she is both passionate and loud like her mother.

Sachi uses these traits in such constructive and useful ways. I suppose this is possible because she also possesses some characteristics which have taken me considerably longer to develop, namely tact and empathy. When I called her yesterday, she was in the middle of a conversation with her roommate so she asked me to hold on so she could finish. I wish I could quote what she said but the words don't matter that much. They just confirmed for me how fantastic a person she is. I could hear all of her strong feelings, desire for changing the world, resistance to injustice, willingness to do whatever it takes, and sense of progress in what she said. I am making her sound like a super-hero. She is my hero. Isn't that what every parent wants? Off-spring who are enough like you to recognize, but an improved version.

Sachi can still be very emotional and internalize some of her anger at the world. When she is down or discouraged, I still see that tiny red-fisted baby refusing to be ignored. She was always very resiliant though. Lately, I have seen her so encouraged. I know that even when the world does not give her exactly what she wants, she not be down for long. Her passion is so strong that she springs back up and she comes out swinging again. Swinging and yelling at the world, "Tickle me!"

I mention all of this because tomorrow is my surgery. I wish Sachi had gone with me to the doctor one of those first few times. She would have heard what I could not and known that everything was going to be okay. My reaction to difficulty is often to shutdown emotionally and distance myself from the pain and fear. It is a protective instinct I developed early on. It's not like logic really takes over. I think what everyone has perceived in me as bravery in facing this ordeal is simply denial. Fortunately, I have had enough time to let my guard down, to look at what was really happening, and to come out swinging. I learned this from my daughter.

Friday, April 20, 2007

Today is conference day at school

I wish all of my colleagues the best. All of my students were doing fine. If any of the parents ask, you can let them know I said so. I was talking to Jon yesterday about the kids who really make teaching worth it. It's those kids who are a little different, smart, and maybe have not found their place yet. When I can get in there and tap into a kid's potential, I am so happy. It's the ones who are the most challenging to teach that help me the most about myself.

With regards to my last post and being defined by those who love you back, not all kids or parents are happy with the effort teachers put in. You get used to it. And after awhile you start to really appreciate it when someone takes the time to acknowledge your contribution.

I wonder some times if I live for the feedback, the praise, the "thank you." When I was doing the math club, I brought in muffins every week. The kids just eat them. A few would say, "Wow! these are really good!" (usually when I used chocolate chips), ask for seconds, say thank you and that's fine. What made me happy was when I had some left over and I brought them upstairs and everyone gushed over them. Richard used to come down every Wednesday to find them. I'm like Sally Field at the Oscars, "You love me. You really love me."

I used to sell stuff on eBay in the summer not even so much for the extra cash, but because I felt like some of my stuff was pretty special and wouldn't it be nice of me to take the time to find someone out there who could appreciate it too. If I gave it to the thrift store, anyone could get it for nothing and might not enjoy it as much as if they had to do a little work, fighting and clawing to outbid others at the last minute. I thought I was going to make someone happy by letting them have my Donna Karan dress or Coach bag for a fraction of the cost. I learned quickly what sells and what doesn't so I only put good stuff up there. The first time I got negative feedback, it crushed me. I had a 100% record and only about 40 transactions and then I got a second negative within 24 hours. Neither buyer had contacted me to tell me they were unhappy before leaving the score (which, for all you non-eBayers, cannot be taken back). Of course they did not realize that I am a nut and if they had let me know they were unhappy, I would have flown to their houses to personally return their money just to make sure they were happy. One was an Agnes B. cosmetics bag that a woman in Australia won for a dollar. She was late paying and sent me an email begging that I not leave her negative feedback for her tardiness. The bag cost me more to ship to than I had charged so I actually lost money on that one. She claimed it was fake. Excuse me? The other was a woman who claimed I told her I was selling a suit when in fact it was two pieces from the same fabric from Club Monaco. I was devastated. Sachi and Brian thought my reaction disproportionate to what had occurred. But if you know anything about math, you realize that no matter how many more transactions I had, I would never have a 100% rating again. And I was doing it to make them happy, dammit. I stopped selling on eBay. I take a charitable deduction on my taxes when I donate stuff to the Goodwill.

Then recently I found a community online called Swapbot. Instead of buying or selling, you swap. Fun! Also the rating is not based on the quality of what you send, it is based on whether or not you fulfilled the requirement of the swap. There are all kinds of items being swapped but I like the sewing or knitting or homemade postcards because it gives me a chance to try out a craft without thinking about the results. When I make someone a present, I get caught up in making it perfect so I am not as free. Some of the swaps require a bit of thought about the other person so you read the profile and learn a little bit about her likes and dislikes. As you can probably guess, I give too much, trying to make a super special package that my partner is going to be so appreciative to get, three balls of yarn when one was asked for. There used to be no way to acknowledge that your partner was very generous on the rating system, so I would get a little note on the Swapbot board or an email thanking me. Then recently they added these little hearts your partner could give that let everyone know that yours was an extra special package or postcard or whatever. A lot of times the partner who was assigned to send to you, flakes out and you get nothing. (It's not the same person you send to.) Some people sign up just to get free stuff and then drop out. You can't stay in the group if you do it more than a couple of times. Also the rating can be changed if the swapper comes through late or makes up for what was missing. I don't care that much when I don't get a package. It's not like I need more stuff.

Okay now to the point of the story. I recently participated in a Good Fairy Swap. That is where you send someone the stuff that some delinquent swapper did not send. I had only been screwed on three fabric swaps but I signed up anyway. The partner I was assigned had a laundry list of items, a christmas stocking full of presents swap, a girly things swap, and a cold weather items swap. Okay that is a lot of stuff, and unlike the swaps I usually do, this required me to go out and purchase the items. I never got a package from my good fairy. Whatever. But when I emailed my partner to find out if she got hers, she was snippy in her response. She claimed she sent me a thank you note already. I wrote back to ask if maybe she could leave me a rating and her response was she does not believe in it and will no longer be giving ratings. Okay fine, but there is a point to the rating system, I explained. I did NOT ask her to rate me again. I just wanted to know if she liked the package? I guess I was bugging her at this point because here is her response:

Hello Aly,

I am sorry you feel that way. And am sorry to disagree, good ratings do not distinguish good swappers from bad swapper anymore as I found out on my own skin that a 5.0 rating means absolutely nothing around here. I've also checked and it's not like you are in a situation where you need my rating to get your rating up here. I am also sorry but I do not rate by obligation nor do I feel the point of rating a fairy swap as when I've signed up for it myself to make good and not thinking about ratings. I am sorry you've signed up to make good expecting to get a grade for doing good, I do not agree with it nor with you insisting with me about rating you. If I would rate you now, I wouldn't give you the 5.0 just for your insistence. I remind you that not only for this swap but for any other, rating if entirely up to your partner, it is a nice thing to do but it is not mandatory nor, once again, do I feel the need to give grades to anyone on a fairy-do-some-good issue.

I've already thanked you and explained that I am not rating anyone here anymore and why, really can't explain more clearly than this to you. Please do not insist... It is polite to ask the first time, it is not polite to insist.

Wishing you all the best again.

Okay so now, a five just means it was sent and was the expected, no more. A three is what you give if it did not meet the requirements and a zero is never received. I did not write back at this point because even though she had illogical grounds to rate me any lower, there is nothing I can really do to stop her.

So am I doing everything for the grade? the love? the praise? the thanks? Do I expect to get back as much as I put in? I have this fantasy about winning the lottery and just walking around handing out $100 bills.

I have to say, I started this blog to keep people up to date on my surgery and medical happenings. I write very freely without much thought to the quality. Then yesterday, Jon said he liked my writing on the blog. I had been really nervous to give him my cartoon because his opinion matters quite a bit to me. He is frank and honest and keeps the bar pretty high. He once commented on something I wrote by saying, he expected more from me because my dad and my sister are such good writers. Grrr! I worked so hard on the cartoon focusing on the results. My blog was just a place get information down. I am a little confused about what mattered more to me, that he liked my drawing or he actually thinks I have some talent as a writer. As long as I have known him, he has encouraged me to write. "There's your story," he would say. He let me read his novel in its earlier stages and it is brilliant.

I used to go to Al-anon meetings when my brother was still alive. It is a support group for families of alcoholics. One of the things I learned there is that people who have a family member who is an alcoholic, tend to be people pleasers. I am. They also tend to think: Don't say the things that might make someone unhappy (yeah, I really live by that motto). The more important lesson was put it out there and let go of the results. Even though I might say I am sorry, the other person may not forgive me. I have no control over the response I am going to get. It helped me a lot in my teaching because I still believed there was this goal could achieve of the perfect classroom where if I just said the right words and built the ideal system, no one would ever call out and everyone would learn all the material. Put it out there and let go of the results.

Being sick has obviously given me a lot of time for self-reflection. When Tim and Roger both died on the same day, I did not think anything about what they gave me or did not give me. I worried that they did not know how much I loved them. Did I tell them often enough? Why didn't I visit Roger more when he was in the hospital? So I started to say instead of living every day like it is your last day, live like it is everyone else's last day. Because when something happens to someone else, it is the living who are left to reflect on their actions. The dead are at peace. They are not sitting around regretting their last move.

This another reason I have for not eating meat, people argue that we were meant to eat meat. We have canine teeth and it's instinctive like in animals. Human beings have the ability reflect, make choices, and regret. We can choose to use these abilities that animals may not possess. Enough. My presentation has grown tiresome, as Deiter on Sprockets, would say.

I grow more and more confident every day, I appreciate the time I have had off to rest and come to this place. My surgery will be a success!

Thursday, April 19, 2007

The State of the Brainion Address

My fellow blog readers, You will be happy to hear that the state is good. I had a really reassuring talk with Emily yesterday. She said I had more of a chance of getting hit by a car when stepping off the curb then in meeting my demise during surgery. Now those are odds I like to hear. Her husband is a neurosurgeon and may be assisting in the surgery and she said I could be up and about in much less than 8 weeks. Granted, her son is in my class this year so she may have a vested interest in my speedy recovery but she does know her stuff. I am going a bit stir crazy. Also Sue came to see me after school and I realized how much I miss being there. I so appreciated her visit. I did everything I could to restrain myself from throwing my body on the ground and grabbing onto her legs as she stepped onto the elevator. Can you picture it? Lily barking, Sue saying, "Let go, I have to leave now." She is a very huggy person and I am so not. I actually don't like people touching me with the exception of Brian under certain circumstances but I won't go there. I am starting to appreciate the hug a little bit more. It's like my mom stroking my arm. It drives me flipping crazy but I think it makes her feel better so I will try to be more patient. Even though I am on the receiving end, it is a way to show appreciation to accept someone's gesture of affection.

This week I had all my pre-op exams, stress test, x-rays,, blood work, etc. Tomorrow I will see Angela about the hospital stuff. I talked to the insurance company and all seems to be in order. Sunday (argh, it's going to be a nice day for the first time in forever) I have to have another MRI.

So here are the details as I know them for Thursday of next week. I have to be at the hospital by 6AM no food or drink after midnight. Under general anesthesia they will shave part of my head on the side nest to my left ear, cut into my skull, take out that little sucker, take some fat from my abnomen (I know! Why can't they take all of it while they are in there?) to use for cushioning? in my head, put a plate in and sew me back up. Now when I describe it I get that scary feeling like when you think, "There is no way that jumbo jet with all those people in it can stay up in the air. It is way too heavy." But I trust that there are people out there that understand this kind of thing that defies logic. My doctor is one of these people. He does this all the time. Amazing!

After the surgery, I will be in the ICU for one or two days and then 5-7 days in the regular hospital. In case anyone did not know, I will be at St. Luke's-Roosevelt (not Mount Sinai where I started out.) I am going to be okay. I feel better every day that passes. The numbness is down to just my left lip and tongue now and every day less and less. I just wish I could sleep! i know my recovery has been and will be aided by all of the people who love me. I feel so supported.

Sachi gave me this song by Jenny Lewis called You Are What You Love and Not What Loves You Back. I love the song but I think the writer is in a bad place. I am a totally different person because of the people who love me back. Having Sachi changed me profoundly. I knew from the time I was very young that I wanted babies and children because I love being needed. I was in no way prepared for how much I was going to love her. I could never even begin to understand what love was until I had this tiny person loving me back. My sister's song "World Before Columbus" is about this feeling. As Sachi has grown up, I love her more and more. I learned along the way to be more firm and each time it broke my heart to discipline her or teach difficult lessons. By the time Sachi was four, she was already saying, Okay, let's compromise."

I went through a similar but no where near as intense experience with my students. One year I went through a really bad break up with a really bad boyfriend and my class was my solace. I could not wait to get to school because there I had twelve kids who loved me and counted on me. I think I fell in love with teaching that year.

So I thank all the people I love who love me back! You know who you are and you have made me what I am. Sounds corny but I am so grateful right now I have to gush a little. More soon.

Monday, April 16, 2007

Daily routine

Somepeople wonder what I am doing at home so I will describe my typical day. I sleep about 5 or 6 hours at night. Consequently, I am tired during the day. Anxiety wakes me up early. I show my appreciation to G-d or the powers that be that I am still alive, either by prayer, or joy, or some other form of communication. More about my spiritual beliefs to come in a future blog if anyone cares.

I think I have some existential blogs coming up the closer I get to the surgery.

So I check my email and the weather. The closer the ten day forecast comes to April 26th, the more real it becomes. I take my vitamins and medicine and drink some coffee. I ran out of my healing beverage, Ciaga and have orderd some more through Maddie. I might blog if inspired. By then I am tired again so I have to go back to bed. Lily is happy because she never got up so now she has someone to snuggle with.

When I wake up, I feel guilty because i still have so much straightening out to do. I really worry that I might have trouble with my memory after the surgery so I am trying to put everything in its proper place and label it. Some days I do not have enough energy to do this so I sit and maybe call the doctors i need to call, making appointments or catching up,. I might try to do some art work and generally feel guilty about not being productive enough. i never feel productive enough and that leads me to believe I am lazy. i have so many ideas for stuff to create, paintings, collages, clothes, quilts, mixed media, knitting, cartoons, baking, businesses to start, efficiency devices, even lessons for my math class. My ideas for things to make certainly outlast the time I have in a day, or the ten days until my surgery, or all the evenings and summers I have in the future. I think maybe in retirement I will either have mellowed out focused in on one goal, or will have time to finish all my ideas. I used to tell Sachi that people cannot die if they are in the middle of something, like trying to finish a qulit. It was certainly true of my friend Roger who knew he was going but finished his book in before he passed.

Okay so by then I am also hungry so I eat something. I have been a little too nervous to eat and have lost a couple of pounds but lately I force myself to eat because I do not want to lower my immune system before the surgery. The food makes me sleepy so I nap again. Then Brian gets home and we catch up and play with Lily and feed Draco. I talk to Sachi on the phone for awhile. Then it is time to think about dinner, watch the news, primetime starts, so I sit on the couch knitting or trying to finish the Sunday crossword until Jay Leno starts and I am tired enough to try sleeping again.

Lame day, I know. The things I should be doing but have procrastinated on are Sachi's financial aid forms (fianlly finished that this weekend with Brian's help), straightening out my finances, writing a will, etc.

I suppose you could consider it cushy but if I were teaching, I would be too stressed out to do any of what I needed to do. I also might not be recovering.

Before the surgery the swelling from the bleed is supposed to go down. I am pretty sure it has by now because (even though the doctors would pretty sure it would not ever happen) I have reagined a lot of the feeling in my face. The only place I still feel it is in my tongue and left lower jaw. Also it does not really feel like novocaine anymore. It feels like I burnt my tongue and my jaw is itchy. I am also beginning to feel all the cauts and bites on my tongue and inner cheek that I inflicted on myself when there was no feeling. Hooray! Rest is good.

Sunday, April 15, 2007

I'm no expert...

Those are words you don't expect me to use. Those of you who know me, anyway. I'll pretty much debate anything. I actually don't bother engaging in discussions that are fact-based because googling the topic settles it quickly. When I am wrong (rarely), I admit it quickly and using a phrase I picked up from Adam I acknowledge the other person as correct. The reason I am not wrong a lot of the time is that I try not to bother with the stuff I know nothing about. I would not touch history, sports, geography, business, spelling, punctuation trivia (by that I mean the annoying comma), outer space, or a myriad of other topics. I am pretty good at rationalizing my ignorance on these and other topics and in general am not too embarassed by my lack of knowledge. The stuff I know is another story. I am pretty arrogant about all that.

The other kinds of discussions, my interpretations of events are much trickier to extract myself from. I am learning or at least trying to learn not to use intimidation tactics to make myself seem more right. Actually, I learned some of this from a friend at work. Getting into a disagreement with her used to make my blood boil. Talking more clearly, loudly, articulately, etc. do not make you right. It might make the other person back down but that is not really so satisfying anymore. She and I admitted to each other earlier this year that we had both, simultaneously and independently, resolved to choose our battles more carefully this year. At least in a professional arena. I guess those of you who work with us may not have noticed a significant difference but change takes time.

Anyway, the real reason I brought up this topic is Sachi. As a parent, it is natural to want to spare your child from any pain. My instinct is to let my experience be a tool for her use as a way to pave her way. I know there is a lot that you can only learn by going through it yourself. It is hard to let go and allow your child to get hurt, when you think you could have prevented it. I watched a friend with her three year old yesterday. He wanted to take the plastic off his own cheese and he was determined. She knew he was going to drop it, or get frustrated so she held onto the cheese and let his hold part of the plastic while she instructed him and did most of it herself. I know that feeling. People ask me if I taught Sachi to cook. To do that, I would have actually allowed her to do part of it. I remember her screaming at me when I offered to put in her contacts, "I will never learn how to do it if you keep doing it for me!" It was a revelation. The goal is not "get it done, quickly, efficiently, painlessly." There are always going to be problems to solve. And there are so many, many ways to solve them.

In my dream I said to Sachi, if I knew how much significance you were going to attach to my words, I would not speak. I have spent so much time trying to get her to listen to me and now that she really does, it scares me. I don't have all the answers. There are so many different ways events can play out. I don't know what makes success or love or happiness. I guess as I have matured all of this has seemed more natural but it's not because I have the answers. The dream was so vivid. We were in this big brass bed (her bed) and it was outside and we were surrounded by peaches or peach trees. I said to Sachi, "Look at all this around you. You are so lucky. It is so beautiful." I reached out and took a peach. I cut off a few slices and tried them and gave them to her to try. "It's not perfect but almost." The feeling was that with a little more time to ripen, the peaches were going to be delicious. There were giant peaches under us too. We were way up off the ground, elevated by enormous Roald Dahl sized peaches. It was a great dream. In my heart, I know that Sachi is going to have everything she needs right there, close to her, just waiting to be picked. I was confident that she is going to find great satisfaction just by reaching out a little. Sometimes it is not exactly what you want right away but with patience, it will be amazing.

Wednesday, April 11, 2007

Angiogram continued

Does anyone know what an angiogram is? Yeah, me neither. I had to sign a release in case I had an allergic reaction to the dye and went into a coma or died. They told Brian to wait in the waiting room that it would be about 45 minutes. I told him to go get coffee or some food but he never listens to me.

I was rolled into a big serious room and prepped by the nurse. That meant some kind of sedative IV and peeking at my groin area to see if I needed shaving (that's where the needle goes in, hence the no undies). The doc came in and commented further on the lack of necessity for shaving and as the sedative kicked in my modesty and any possible mortification faded quickly. After that all I remember is that they occasionally reminded me to hold still and asked me why I kept curling up my toes. I do it all the time. I am not sure if it is habit or side effect of the brain tumor but if I do not concentrate on not doing it, it just keeps happening. I guess dye or something (a wire? a catheter?) was fed up to my brain so they could see the extent of the bleed. I kind of feel dumb that I don't really know what was going on except it was hard to focus on anything other than somehow from my groin area they were getting up to my brain area. They said they were going to try to put a stitch in at the entry point but if that failed I woulld have to stay supine and still for nine hours. They got the stitch in so I only had to stay down for two hours. Woohoo!

Then it was over and they wheeled me out. Brian was a little freaked because he had not gone for coffee since he did not want to miss me getting out of there and I had been in there for two hours.
They put me in a recovery room to wait for transport and I figured that would be forever so I convinced Brian to go eat and bring me a Starbucks. Bad idea. Head of neurosurgery chooses that time to fill me in on what is going on. He told me nothing I had not heard before except that it began with a lesson on how the circulatory system works. I wanted to tell him I took Bio in college and even remembered that it was arteries that go away from the heart because they both start with a but I let him ramble on. Very slow talker. So usually it is capillaries that spread out with their thin walls to make it easy for oxygen to reach the surrounding tissue before bring the deoxygenated blood back to the heart and then lungs to pick up more oxygen. By the way pulmonary vein and artery (from heart to lungs and back) are exceptions to the letter a rule since they are reverse in oxygen content. He did not tell me this I just thought it might be informative to my readers. Instead of capillaries my body made this weird raspberry-shaped bubble thing and one of the bubbles bled mostly into the rest of the cavernome but 20% into the brain.

They did not fix the problem with the angiogram as was mentioned as a possibility. They did not put in a shunt. I would need surgery, I could go home today, and I was to come back and see him next week. I am amazed I remember this much because I was seriously coming off some strong sedative that starts with an F or maybe Ph. Transport came while he was talking but that did not alter his speaking pace and I could understand why they get so backed up. I heard Brian searcihing for me in the hall. And we went back up to my room. We were both a little annoyed that he missed the big important lecture. But I got my latte.

After lying still for two hours, they released me from the hospital. My groin was in so much pain, I could hardly walk but the nurse told me no more blood thinners ie. Advil, Motrin, etc. I told the doctor that Tylenol did not work for me. Her response: "It does not work for anyone." Okay great. She said if I take it with caffeine it could be more effective. Dr. Casey came back to and he did not think it would be likely that I could go on vacation but the other doctors did not concur and I left the hospital confused but happy.

Tuesday, April 10, 2007

Blame it on the brain tumor!

It kind of became a joke at work even before my diagnosis. My face was numb so I figured if I said I had a brain tumor then it could never possibly happen. I have employed this type of magical thinking throughout my life. If I say the plane is going to crash, then it can't possibly happen. I'm not psychic. So the brain tumor idea became a convenient excuse. When I forgot to take my bagel out of the toaster oven and left it sitting there all day, my fellow teachers might comment. Then I could say sorry, I have a brain tumor. Who left this half a cup of coffee sitting around? Excuse me, brain tumor. OMG even I knew that crossword clue. Do you have a brain tumor? Once Maddie said, "You don't know that yet?" "Yet!!??" I teased her about it but I thought it was really funny.

After my diagnosis, no one had ever heard of a cavernous angioma or a cavernoma, so "brain tumor" had to suffice. Benign brain tumor is, of course, more accurate but it's a bit wordy. Now it is my free pass. I can say it with my family and they know I am joking. I think it in the elevator when I ride to my apartment on the second floor.

It also might explain a lot from my past. Two years ago, I fell on the tennis court trying for a difficult backhand. Two staples in the back of the head. Last summer, I fell on my face after tripping over a pair of Brian's jeans. Six stitches in my chin. The day after Christmas, I fell into the side of a train that I was running to catch. Torn jeans, bloody knee, dirty face and hands, public humiliation being helped up by a seventy year old man. Clumsy? I guess I have always been a little uncoordinated. I remember when David tried to teach me to play squash in college. He was as close to infuriated as I have ever seen him. It's true, I have taken over twenty years of tennis lessons and am still only able to get the ball over the net 70% of the time, okay maybe 60%.

Right before I had the bleed, I was seeing this great organizational specialist. He was helping me figure out why I am so scattered. I lose everything I put down. I forget what I was looking for when I try to find it. I remember almost everything I hear, but dates do not seem to register. I frequently schedule two different things for the same time and date and remember them both until it is suddenly time to do them. I once scheduled Sachi to fly home from her dad's house in Japan for the exact same day that her sleepaway camp started. It's as if there were two different July 19ths. I can pretty much only stay on task for 15 minutes at a time. (This trait is actually fairly helpful as a teacher because kids need to change activities about this often to stay engaged.) Soon after we got married, Brian commented on my large collection of Get Organized books and how they did not seem to be working. I have developed some effective coping strategies but Chris was teaching me great new stuff. Now I am pretty sure I won't need all that.

After the surgery, I will no longer procrastinate. I should be able to read more than five pages of a book before putting it down because it is boring. I will be able to stay engaged in a conversation with my daughter on her birthday even if I think I see someone I used to teach across the room. My house will be tidy and my desk clutter-free. No more turn-off notices because I lost three months of Con Edison bills. If you open my sock drawer, you will find socks, pairs of socks, not smooshed tank tops, crumpled receipts, safety pins, tried on and rejected Spanx. And ... I challenge anyone to beat me at tennis.

Saturday, April 7, 2007

From March 9th

I had the most wonderful experience today. I went to St. Lukes-Roosevelt and saw Dr. B at the request and arrangement of the Emily M. He is also a friend of the C. family. I taught all four kids in the M family and all three of the C kids. He confirmed my diagnosis, benign tumor, angioma in the brain stem. TOTALLY OPERABLE! Right then and there he calls Dr. S. Dr. S. is already scrubbed in for surgery but agrees to see me next week. Two minutes later Dr. S. calls back and in 30 seconds he is in the office. He sees my MRI, says yes surgery, wait a few week for the swelling to go down, go on vacation, come see him next week. I told him knew Monica and Karen and he smiled a lot. He remembers doing their surgeries. I am so grateful to be in such good hands. Brian and I both felt reassured.

Friday, April 6, 2007

The angiogram

They told me I could not eat after midnight and that always freaks me out. I don't actually end up feeling deprived or hungry, it is the fear of hunger that bothers me. In general if I go anywhere unfamiliar or am traveling, I carry a store of food, just in case. I also keep a little store of food in my classroom.

Side story, I have always had this "Just in case there is a war" mentality. I must have seen some WWII movie at an early age that affected me profoundly. I keep my gold jewelry and first engagement ring handy in case I need to barter my way out of the country. Cash could be worthless. Then I have the escape plan, grab the jewelry and throw the pets into pillowcases. I read that somewhere. Pets will panic and jump out of your arms. The pillowcase will protect them from smoke, cradle them, prevent you from getting bitten or too scratched, and they won't get lost.

Okay, so now that I have formerly declared a bit of my insanity we can move on. Those of you who know me already know I am a little off. Listen it's probably the brain tumor. Once it is out, I will be a nice person who does not make sarcastic, off the cuff, scathing remarks. The cluster is probably pressing on my verbal impulse control nerve.

So we had some sandwiches and then Brian left and I kept watching tv and eating the rest of the food Brian P and Caroline had brought for me and drinking a ton of water. I stopped at midnight and figured I could sleep then but it was really hard. I was in a room with three other people but it was the stroke ward so they were pretty much silent. It was the beeping and ticking of all the machines. Someone may as well have been whistling and tapping a pen on his desk, it was so annoying. Fortunately I had my iPod with the 350 songs Sachi had loaded on for me. I listened with the volume only high enough to drown out the other noises. At first I cried a lot because all these sad songs came on like the Cold Play spiderweb song which fills me with guilt for being a terrible mother and ruining Christmas. Then Gypsy and Rosemary. Homeward Bound. Even Fat Man in a Little Coat made me cry because it reminds me of Tim. It probably was not the songs making me cry but my firmly established indestructible walls of denial prevent me from considering any other options.

In the morning, the nurse who was on was so nice. She brought me this little toiletry kit and change of hospital clothes and asked me if I'd like to get cleaned up. Communal bathrooms skeeve me out, by my roommates did not appear to have been out of bed for a couple of days so I took a shower. It felt surprisingly good and I was refreshed. Brian arrived and then shortly after a really hot doctor came to pick me up for the procedure. Transport is not the most efficient branch of Mount Sinai. I realized I had not put on clean panties yet and Doc Hottie said I'd be better off without them. I glanced over at Brian in horror.

Wednesday, April 4, 2007

Scary Hospital Stay

I think the worst part of being in the hospital was the confusion and uncertainty. I got to my room and we got the tv turned on in time for Wheel of Fortune and Survivor. I was so relieved. It wasn't just being able to watch my favorite shows, it was being alive. I really wasn't sure despite all the information I had received whether or not I was about to drop dead. The angiogram the next day (I later found out) was to rule out an aneurysm or blood clot.

I kept my cell phone on mute and texted people the hospital phone number. Of course, we had no idea that they stop letting the phone ring through at nine. The nurse who helped me turn it on, in fact, reassured me that the ringing would not wake me up in the middle of the night because he was pretty sure they turn the volume of the ringer a little lower. Hmmm. So no one called me and I got a lot of text messages. Sachi really did not want tocome home because she had just been home the weekend before and felt like she was living on the train. We finally got to talk (I broke the rules and used the cell) and she was able to look up all these new terms for me on the net - angioma, cavernoma, cerebellum, etc. She said the only time the surgery was possibly fatal was when the cavernoma was in the brain stem. I thought I was golden because I remembered the doctor saying it was between the cerebellum and the brain stem. No idea which doctor of course. There was one guy I started calling Ben Casey because he had a doctor's bag, like the old-fashioned kind that opens in the middle. Okay that was not his name but at least I recognized having seen him before. He nudged out some much older bearded guy when I was waiting aroung in the ER. "Dr. Casey" kind of looked like Matt from Beauty and the Geek.

More later...

Tuesday, April 3, 2007

More recap...

After my MRI, the doctor requested that I come in right away, Sue offered to walk over with me and I was really grateful. I was not having a very wobbly day I was just really really scared and she can be super solid. We walked over and the doc told me I had a cluster of veins in my brain that did not belong there and that they had bled. I did not really understand. Like a stroke? Yes, like a stroke she said. Is it dangerous? It can be. She wanted me to have an angiogram, I think now to rule out an aneurism. She sent me to be admitted to Mt. Sinai through the ER.

I was pretty freaked and really did not understand what was going on just tha it was serious and I had to go to the hospital. I told Sue and we walked back to school. I was already (over)packed for my trip to Cambridge but I had not written any plans for the sub and I felt guilty leaving the class in such a mess. Fortunately it was a test they were doing so that would be easy enough. The worst thing I felt and This really was all I could think about was how disappointed Sachi was going to be that I could not come to Cambridge for Junior Parent's Weekend. We had both been really looking forward to it for weeks. I grabbed my stuff, talked to Meryl, and Sue took me to the hospital in a cab. She stayed with me and we called Brian, Sachi, my mom. I ended up turning a lot over to her because it was too much getting checked in and everything. This turned out to be a brilliant move because besides being an excellent teacher (Sachi's improvement in both athletic prowess and confidence stand as proof), Sue is very good at keeping a situation under control. No loose ends.

Little by little, my sis, Brian, my mom got there. And little by little more doctor's saw me. I wish I could remember their names. Each had his own style and explained more about what was going on. One very handsome neuro guy did the best job and I finally got it. As a result of my MRI they could see that I had what is known as a cavernous angioma or a cavernoma. It had suffered a slight bleed and was swollen. It was pressing on my trigeminal nerve and that was causing the numbness on the left side of my head. It was also pressing on some balance nerves or whatever and so I kept stumbling and feeling nausea, etc. They all said I would need surgery but Dr. Handsome explained it the clearest.

Then there was the endless wait to be admitted. Caroline and Brian P had brought me some food because I missed lunch and dinner waiting in the bed in the ER. They kicked the whole family out but kept saying I would be moved upstairs to a bed soon. At that point I just wanted to be up there in time for Survivor. No way I was going to miss that. Okay more later.

Sunday, April 1, 2007

Back from vacation!

I happen to be very depressed despite a wonderful vacation. Sachi beat us there from Boston and it was so nice to see her. We walked down the beach and she told me about what has been going on at school for the last couple of weeks. (Between her mid-terms and papers and my leaving work we hadn't talked that much). She is doing great, working hard, getting to know an old friend a little better (I'll say no more.) She just seems really happy and optimistic. I love her so much and it was so great to hang out. I charged my iPod when I got home. Stupidly ran the battery out not listening to it all the way to Turks. Only sad and strange songs seem to be coming up. Songs I don't even remember having on there. I googled and searched uTunes for the Crazy Signs Brazilian song we heard and I loved and I no longer remember any part of. JK JK I know it is iTunes or something. I may have a brain tumor but I am not stupid.

In the Fort Lauderdale airport we ran into Hannah R and her family. At first I thought she was the owner of the water bottle I had just picked. There was literally no water available for purchase in the entire airport and I found a bottle on a counter, cold and sealed. So she walks up to me and I am like "Oh is this your water? ... Hannah?" It was really cool to hang out with her and her family the whole trip. We laughed a lot at dinner.