hodge podge farm: wool 100%

hodge podge farm: wool 100%

How I Got My First Doll

My parents were hippies. They were the fascist kind though. I guess what you might call P.C. now. We couldn’t have toy soldiers or guns. Not that any of that mattered to me. I just wanted a doll. Any doll.

We couldn’t have those cool small plastic cowboys and Indians. We weren’t allowed to call them Indians and this was 1969? WTF. Maybe that was normal hippie stuff. I don’t know. We never watched westerns but they did let us watch some movie called Soldier Blue. It was probably one of the most violent movies I have ever seen. Sick stuff but it was supposed to wake us up to the reality of what the “white man” was capable of doing.

There were some arbitrary distinctions drawn over what constituted white. My mother was white and so was anything uptight, repressed, formal, unemotional, polite, institutional, conventional, and the list is too long to mention here but I think you get the idea. My dad is Puerto Rican and deeply and vocally resented all of the aspects of the United States that he secretly wished he was. I think he wanted to be a Kennedy, not a Mayflower descended WASP, but a privileged Irish-Catholic whose great grandparents built America with their hands and earned their position amongst the elite. That kind of white was okay. We were labeled “white” whenever we bought into any of the mass media bullshit the mainstream was feeding us.

We were white when we didn’t “speak our feelings.” I hated speaking my feelings. I was a kid. I made up feelings just to get out of having to think about what I actually felt. Mostly I said whatever I thought my dad wanted to hear. In college when I finally did start to speak my feelings which were at that point pretty dark, I realized the rest of the world black, white, green or purple, did not really want to hear me say, I FEEL LIKE I’M BLEEDING ON THE INSIDE AND I THINK I MIGHT BE LOSING MY MIND! I walked around frowning and resenting everyone who passed me on the street, shouting, “Smile! It can’t be that bad.” F%*k You! I am not here to make your world prettier by smiling!

When I was in sixth grade, my dad picked me up from school one day. My brothers and I usually walked home by ourselves but for some reason this day was different. New York City public schools were tough and I could never figure out how, aside from fighting which I found loathsome, I could earn the respect of my peers. The next day at recess Yvonne asked me, in front of all my classmates, “Why didn’t you tell me your father was black?” I knew I was not supposed to say the answer that popped into my mind but, crap, I didn’t even realize he looked black. I just shrugged my shoulders and said I didn’t know and watched my social status rise.

My dad called himself Puerto Rican or Hispanic if you were going to generalize and we always said the same. I parroted his “Spanish? I’m not Spanish. Spanish people are from Spain. I'm Puerto Rican.” It didn't sound credible coming from a tiny pale girl speaking annoyingly proper English. This was before Latina came into fashion and besides my Spanish was fairly limited. “People of Color” is loathsome to my dad. I can’t remember why. Something about everybody being a color or the condescending sound of it. Maybe it is because people might think he was black if they had to pick a “color.”

Don’t get me wrong, black was cool in our house. His students came over to our house and spray painted “Black Power” on our walls. I mean they had permission and all. There were some crazy parties that we slept through. We woke up to find people sleeping on the floor in the living room, glasses half-filled with beer and cigarette butts, extinguished tiny ends of joints in the ashtrays, and our long hallway covered with red and black slogans of the time graffited all over. “Power to the People” “Make Love Not War” “Burn the Bra” Stuff about freeing people unjustly locked up, Mao, “pigs,” and “women’s lib.”

That was another reason I couldn’t have a doll. Fashion dolls like Barbie represented the objectification of women we were fighting against and baby dolls let little girls pretend to be mommies when there were other goals we were supposed to have. Banned professions to aspire towards were nursing, teaching, stewardess, beauty queen. There was a Barbie knock-off doll tied around her neck to a lamp swinging naked as a symbol of… I still don’t know. I really wanted to cut her down and sew some cool bellbottoms for her or maybe a dashiki.

So one day as I was walking past Lampston’s right across the street from our apartment on Broadway and 102nd Street, I saw in the window a black doll. She was wearing the exact same dress and shoes and socks as the white doll in the box next to her and she had the same exact features. She had arms and legs that thanks to plastic sockets bent at the hips and shoulders. The only difference was she had black curly hair instead of blond curly hair and brown skin instead of white. I could still dress and undress her, give her baths, put her to sleep in a shoebox bed where her lids would shut when she was tilted backwards. I hoped her being black was the loophole to the “No Dolls” rule. I planted the seed by declaring one day, “I want a black baby!” It got my dad’s attention so as my eighth birthday approached I dropped hints about where my dad might purchase such an item.

Here I am at my birthday party proudly holding my doll, my smile betraying the joy at realizing that if I could just find exceptions to rules, I would not have to be bound by them.

More of the postcard book

Some highlights of summer

I spent some time out in Amagansett with my bro. Bri and my mom even came one weekend. We had a little BBQ. I left all the cooking to everyone else and had a delicious burger without the meat. We also grilled the zucchini from John's New Lebanon garden. Wow! They were delicious.







Lily had a wonderful time too. Boy does she like to be out of the city. Our time upstate and out on the island were the best for her. She was so lively, leaping through the grass, chasing butterflies. Here she is exhausted after a long day.




This is an afghan I knitted this summer while I was recovering. Bri brought it to Ireland for my mother-in-law. I think she liked it.

Postcards

I have not got this picture posting thing down yet. I will try again with my postcards. This one is sideways but it is a print of my actual MRI on sheer fabric over a tie-dyed fabric my brother Tim gave me. He always wanted to collaborate on something. Over the tumor, I added some beads to look like a raspberry. The actual tumor outline is bigger as you might be abe to tell. Scary huh? But guess what! I had my follow-up MRI and it is all gone. That means it can't grow back. I do have a hole in my brain where the tumor used to be. It's not going to go away either, according to Dr. Sen.

Mentally exhausted mind state

I slept until 10 AM thiss morning. Very late. I guess relief from finishing my postcard book. I am too tired to write or post the excellent photos right now. In case anyone was wondering, I have been working on this obsessively for weeks and that is probably why none of you have seen me or heard from me. Now I have to clean up a million assorted pieces of art supplies and (here is the hard part) put them where they belong. I am gearing myself up for going back to school. It is going to be fine.
KISS. Student directed learning this year. The burden is on them. No passive learners. Just got to get them motivated and confident.

So much art this summer

I finished my fabric postcard challenge for Quilting Arts Magazine today. I got to the post office at 4:45 and overnighted it. I hope it gets published. This is the cover, well a scan of the cover. It looks much better in person.

Creative juices flowing

Since I am nearly all better now, my mind is constantly churning up ideas for things I am going to make. The Renegade Craft Fair this weekend was great. I did not buy much because, like most people there, I think I can make it all myself. Hmm. I looked for some hand spun yarn since I have not mastered that skill myself but no luck. Sachi and I both won raffle bags full of free stuff from Adorn magazine. Hooray!

So here are my projects:
1. I was trying to knit the "Sunset" dress from the Rowan Kasbah Collection. I probably knit and frogged (pulled out) over ten samples. I brought my samples into Dona at Yarntopia and she helped me tweak some minor details. Then I began the pattern in earnest and all the same problems. I wrote an angry letter to Rowan yesterday and if I do not hear from them, my angry online tirade will begin.
2. I am making a t-shirt quilt for Sachi. She has many cute logo shirts that are too small but so soft so they are going into a quilt. I found a lady who will do the quilting with her long arm machine for me.
3. A series of vacation postcards for a Quilting Arts contest. Since on my last vacation, I was basically obsessing about brain surgery, I am incorporating some disturbing imagery. I will post as I get closer to being done.

I have to go to school today because my classroom is a mess and I am sharing it with another teacher this year.

Thank you

Thanks to everyone who read my blog. I am feeling so so much better. More relevant as to why I have not written is I am tired of being unwell, talking about it, blogging about it, even thinking about it. I want to rejoin the land of the living. I do want to start a new blog and I will leave the link on this blog for anyone interested. I went to field day for an hour. I am going to graduation, sixth grade promotion, some parties, a new class, just one thing a day for now.

Pleasure and pain

Ah, that they were only equally balanced in life.

My philosophy is that there is fortune and misfortune in everyone's life. While things are good, enjoy it but don't be surprised when the bad drops in on you. It is inevitable. Hence, my take-it-in-stride attitude when news of the angioma came along. "Brain surgery? Okay, thanks for letting me know. I was wondering what the next hardship to befall me was going to be."

My friend David told me that his father always told him that life is about problem solving. On any given day, before you go to sleep, what challenges will you face and overcome. I do get frustrated when the problems are caused by the incompetence and stupidity of others. Looking over the credit card bill, you notice that Duane Reade charged you twice for your recent purchace. This will necessitate a phone call, some discussion, possible correspondence to save you from being charged an extra $27.16. In the hour it takes you to complete all the task, you could have been solving a bigger problem. This is the nature of life.

So pleasure and pain, the extremes of the human experience. They are both so distracting. Very little can be accomplished while in the midst of these sensations. In moments of intensity, the brain ceases to form words, the mind goes blank. Having spent the last three weeks in varying degrees of pain, this topic is interesting to me. Why is pleasure in the extreme so fleeting? There is the obvious - thirty seconds? The endorphin rush during exercise - moments? The first few bites of chocolate or something delicious - two minutes? A massage - thirty minutes? A nap on the beach with a tropical breeze - two hours? And as the strength of the feeling intensifies so the the amount of time we experience it diminishes. Why is the same not true of pain? We are capable of experiencing intense, debilitating pain for very long periods of time. Why are the two experiences not balanced?

I never questioned this before. The fortune-misfortune balance makes sense to me having experienced both. In retrospect though I realize I am one of the lucky people on earth. Even with the brain surgery, the good in my life far, far outweighs the bad. There is no formula. There is no way to anticipate either. It is pointless to pursue only fortune or pleasure as life will just get in the way and the disappoinment can be profound.

I suppose that is why some people become heroin addicts. Having no experience with this myself, I rely on the impression I was left with after watching Trainspotting. It (heroin) appears to produce a longlasting, very distracting, even debilitating feeling of pleasure. This inevitably is followed by what appears to be an even more intense degree of pain, as the addict is forced to withdraw. While I was having coffee with Aimee this morning at the Silver Moon Bakery, there was a woman with whom we were forced to sit laughing at nothing we could discern. It was very disconcerting and finally she moved away. I am sorry but anyone who experiences nonstop pleasure with no outside influence appears to be pinwheels-spinning-in the-eyes crazy.

Since my senior year in high school, I like to fancy myself an existentialist. This based on reading Crime and Punishment and Camus' The Stranger. "The benign indifference of the universe." There is no point in cursing the heavens as there is no power out there determined to make you miserable. Stuff happens and it happens to all of us. So then why do I pray? For the most part my prayers are expressions of gratitude for all of the positive in my life. When I am facing adversity or I am afraid, my prayer takes the form of admitting that I may not have control of the outcome. By putting my fears out there, I can relinquish them. I let go so I do not have to worry anymore. Prayer gives me a sense of relief that I do not have to pour energy into a problem over which I have no say. I do not pray in the morning that I will eat enough protein to help my nerve cells heal or accomplish my chores for the day. I can work on that. But I prayed that while I was unconscious during my surgery I trusted that whatever the outcome, it was all cool. I can't even say I ask for a positive outcome because that's not really the effect I expect from prayer. I acknowledge my puniness and I feel better as a result.

Today I am very glad to be out of excruciating pain.

Tired of being tired

Yesterday was Mother's Day. I went to a restaurant for the first time since the surgery. Unfortunately I was having a bad day, nausea mostly and by the endof the meal I was tired. I was also tired of talking. My voice is very loud inside my own head. Because my ear is all stopped up, sometimes even worse with air, I hear a kind of echo and super loud version of my own voice and breathing. I can't really hear what other people are saying so much. It is the worst on my walks in the park. It makes me want to whisper. i also can't tell how loud I am talking. My hands were shaking a lot and I had trouble putting butter on my food. Food still tastes very strange because some of my taste buds are numb.
I seem to be past the worst of the pain. Yesterday I managed with two Advil in the evening. It feels good. What is left still in pain is my ear, the incision area above my ear, my temple, jaw and the four inch long incision in my abdomen. More annoying than the pain is the stuffed up feeling in my head. My left skull is full of cotton or insulation.
I know it has been a very short time and I am recovering so well. Things could be so much worse. I can think clearly, talk, read, use all my muscles, swallow, well the list is so long. I feel guilty when I am not grateful and I really have not complained a lot. My philosophy is that everyone has good and bad and life cycles through them so I am not surprised when fortune or misfotune manifests itself in my life.
I will see the ENT surgeon tomorrow and that may be helpful in understanding the echo in my head. My hearing does not seem to be bad, just blocked.
Not a funny or entertaining entry, just a cranky complaining entry. Please don't forget about me. I still need company and people to encourage me not to feel sorry for myself and people to make me take my walks. I can answer the phone easily and walk up to a half an hour.

Can I get up now?

That's what the kids ask when they think their time-out has gone on long enough. Sachi would say it when she thought enough time had been wasted pretending she was napping and she could have been reading. That is how I feel now. Every day I have more energy, better senses, appetite, focus, etc.

Yesterday I had a horrible day. Tuesday we went to have the stitches out and the doctor says time to switch to ibuprofin. I am fine with that as long as it helps with the pain. At this point I am only aware of pain when I am between medicine times. In other words since last week on Wednesday, I have taken the Tylenol with Vicodin every six hours. So I go home and in the afternoon I start the ibuprofin and within two hours I am in a lot of pain. I hardly slept but when I got up I was in so much pain I could only curl up on the couch and hold very still. At nine I call the doctor and don't hear back from anyone so at noon I call again and by now I am frustrated and crying. Angela says I should alternate between the two medicines (which to me is like okay you can have pain and then no pain). Also now Angela says the doctor wants me to get a cat scan. All of this took like three phone calls back and forth. I start to feel like there must be something wrong with me that I am still in so much pain. Angela says it is just a set back. SET BACK? I have been getting better and better. So much better. Then I stopped taking the medicine and that is called a set back. Long story short, many teary phone calls to the people I have come to love and trust on this matter, namely Emily and Judy. I am back on the pain meds at least for five more days. I really do not want to end up an addict. Fear of suffering is often worse than suffering itself.

Okay my current obsession is what happened to my thank you video I made for my students. Last week Melissa brought me cards that all my students made for me. They were so beautiful and personal and I was really moved by their love and concern. So really with very little energy to move around, I wrote a script and Brian helped me film it, then my mom helped me film it again Monday, so it was done on Tuesday. I called Maddie Tuesday morning asking her if she could bring it in for the kids that day. They worked hard to make my cards so I worked hard to make the thank you. I thought it might reassure them that I was okay. So despite the fact that the concert was last night and she is really busy, Maddie brings it in Tuesday and as a courtesy I mention to Meryl that she could take a look at it before Melissa shows it to the kids. It is only three minutes long (and I believe fairly innocuous). That was it. i have not heard back from Meryl, Melissa has never even heard of the video, and I am sad that the kids have not seen it yet.

Tomorrow is Field Day. I am missing everything. I am getting better. Every day such a difference. Look how much I am writing. Granted it is 5:30 in the morning. I only walked once yestereday because I spent the whole day writhing in pain, crying, or talking on the phone.

In the evening Danielle came to see me. She was and always will be one of the most beautiful people I know. When I talk to her, I feel like she really listens and really cares. I always wish I could be more like her. Even though I know I am self-centered, I try to really listen to other people and ask questions. Danielle is natural. She has two kids now and she works really hard but she still has the energy and compassion to come and see me and make me feel important to her.

After that David came by and we ate Chinese food and watched America's Next Top Model. David is my best friend from college. Even though we never get to see each other anymore, I do not think there are many people who know me better than David does. He probably does not think about it that much but we went through a whole lot together. Actually his wife Ruth (I got them together) reminds me of Danielle. She was the first to show up after Tim died. Even though it was the same day as Roger died, she recognized how hard it must have been and brought me food.

Anyway I am starting to get exhausted from looking at the screen so I have to go. I want to be better now!

Minor setback.

Happy the stitches came off, took a shower, washed hair. Head hurts too too much. Pain meds changed. Will call them today. Was feeling so much better. Argh!!!

Stitches come off today!!!

I can not tell you how much better I feel. Yesterday was a great day. I woke up without a headache (not quite as lucky today), used my juicer to make use of the remaining pieces of fruit from the basket school sent, had a masseuse come to my house, and took a long walk with my mom. At night I even knitted three rows. Standing to use the juicer took quite a lot of energy but it felt so good to be productive again, not to mention the delicious smoothy I had afterwards. I had a short nap and then Kayo came over to give me a massage. Incredible! I am holding so much tension because of the pain and the fear of the pain. At night I have to will myself to relax and I feel my shoulders just unclench. The knitting was the biggest progress. It took a lot of concentration and afterwards I was sweating.

Today my mom and Brian go with me to get the stitches out. I don't think anyone is bringing me home though. I hope I can wash my hair roon. It is really disgusting now. I think Brian counted 45 stitches. I hope it is healed enough and does not bleed. I have the stitches on film. i amde a thank you video to send to the kids. I hope it helps them to see I am getting better and am still the same. I do seem to have develop a slight lisp though.

I am so happy to gradually be returning to the land of the living! The past couple of weeks are like a blur to me. I am also so grateful to anyone who visited me. Maddie, Audrey, Jackie, Sue, Caroline, Marissa, Caryn, Judy and Max, Meryl, Mimi, Melissa, Aimee and Noah, Emily, Suz, Ruby, Paul, I will remember and write more later.

Getting better

I took two walks today but I am counting it as three because I rested during the second one. This morning I walked four blocks to Starbucks and then four back, two of them without Brian so that we can make sure I can walk on my own. Then in the afternoon we walked up to 106 and West End and sat in that little park for about ten minutes so by the time we walked back home it was like a new walk. Does that make sense? The computer screen is not straining my eyes as much but it does take a lot of effort to think, write, and type at the same time. Tomorrow I will have been home a week. I don't know what I have been doing that a whole week has gone by. Baby steps. It's a good thing I am a patient person.

Too much info - just having pity party

I will write more when I feel better. The following was dictated at kind of a low point yesterday:

It has been a week since the surgery. I can hardly believe it! My mom is typing for me so I can actually get some ideas down. I feel pretty lousy but I guess that is to be expected. I take it I am in much better shape than anyone expected. Everyone keeps telling how great I look. (except for Jaime, my doorman, who was shocked when I flipped over my hair and showed him the 7 inch incision line. He looked like he was either going to faint or be sick. I guess I should warn people before doing that.)

Because I did not know what to expect, everything I feel surprises me. I have no paralysis. I do have a lot more numbness on the left side of my head. I alternate rapidly between hot and cold, sweating then freezing. I am nauseated and feel sleepy a lot. My appetite is coming back slowly and I need to remember to drink a lot of water. My head sometimes hurts tremendously and the medicine seems to just barely take off the edge.

Walking feels good once I am up, but exhausts me after 10 minutes. I want more fresh air. It is great to get clean even if it is just a sponge bath. My stitches are starting to itch and will come out next Tuesday.

I’m very happy that my mind is sharp. I can have conversations and laugh. I wish I could read or focus on visuals for longer, but I can listen for long periods. I have caught up with some of my favorite shows with my eyes closed the entire time. It hurts my eyeballs to keep them open too long. I can’t knit or doodle because sitting up requires most of my attention when I’m doing it. I appreciate even the smallest pleasures just the touch of my mom’s hand squeezing my shoulders, or a bit of chocolate melting on my tongue, or Lily snuggled up next to my tummy.

I can’t have much physical contact and I didn’t realize how much I would miss it. I really want to kiss Brian, sorry but do. I love the feeling of my head sinking into the pillow, but when I lie on my good side, I am almost deaf, and when I lie on my stitches, besides hurting, the smell of the sweat in my dirty hair makes me gag. It is strange that I have so little sense of taste, yet such a strong sense of smell. For the first 24 hours after getting home, I could not stand the smell of the dog and Lily got sad after being rejected so much.

There are also so many strange things going on under my scalp. There are lumps and bruises, scratches and swollen places.

I am learning to relax and let other people do things for me. My mom has been with me since I went for the surgery and she has to go back to work next work. I am already sad and scared about how I’m going to feel without her. I have not had many visitors, but I really appreciate the people who have come. I told Caroline today that I wish people could just come over without having to call or buzz from downstairs. I love the company but I don’t like the planning! I can’t answer the phone or the door very fast. When someone is around, I just feel happier, stimulated, and more inclined to sit up and interact. So far all I do every day is sleep, make myself eat and make myself get up and walk around. Without other people helping motivate me, I probably would have a hard time doing anything.

So many people have encouraged me to have a positive attitude before the surgery. It was much easier to do than I thought it would be. I think now is the time I need to gather all my strength and maintain a positive attitude. The symptoms will subside and return as I continue to recover, and I will continue to remind myself of how much I have. I told Emily yesterday that there had to be no profession better than being a teacher if you get sick. I feel so lucky having so many people love me and care about me.

I am home!

I got home on Monday but I do not have enough energy to write much yet. My mom might help me soon. I feel so sick and tired, like the flu or a hangover. I am so happy the surgery was successful but it is hard to be grateful when I am in the midst of pain. Maddie stopped by this morning and her words were very helpful. I need to remember that this will pass. Pain never feels temporary while it is happening.

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!

~Sachi

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.

http://www.angiomaalliance.org/emotional.html

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.

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!

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.

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.

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.

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.

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.

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.

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.

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...

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.

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.

Student Goodbyes

I met with all my students today. It was very moving. I was very serious whenI told them what a true pleasure it has been to teach them this year. They are open to learning, have positive attitudes and are willing to put in the work. I am so proud of them and so sad to leave them. Dakota said I gave her confidence in her abilities. Connor said no one had really ever pushed him before. Maurice (I love him so much) said I made him really like math. Jake made me feel better by telling me his grandfather had brain surgery and he is fine. Kate cried, as did Juliet, and Mallory. I know Mallory is really scared. She thinks birthdays bring you one step closer to death anyway. 6-4 was so articulate about what they appreciated about me. 6-1 made me feel very loved. 6-3 as usual was hard to figure out. They had little to say. 6-2 has the real workers and I know they just want to make sure the challenges keep up. I love all of them so much. I really think taking the time to get to know them individually in September helped so much. Gene said being new was hard but I really helped him make the transition. Laura cried too. Maybe I can get better fast and come back before the year is over.. I did end uptelling them more details than Ihad planned but Ariana thought it was better than letting their imaginations and rumors run wild. By the way, she was so helpful. I think she does an amazing job with the kids. I really needed her ther and it helped a lot.

Good Day!

I had a great day today. I think praying this morning helped a lot. I am grateful right now to wake up in the morning alive and able to do all of the things I want to do. I can talk and walk and sew and teach. I felt a lot of love from my students today and I am so happy for Melissa taking over my classroom for the rest of the year. All of the parents seemed totally okay about not having conferences.

I want to continue to recap the last few weeks though. So I went for the MRI with very last minute approcal from the insurance company. I even got there and Radiology did not have the approvalcode. They made me call the neurologist to get the code. Brian met me there and waited while I went into the machine. He said I was gone for two hours. I had no idea. Despite incredibly loud bangs, clangs, beeps, and other car alarm type sounds in the machine, I fell asleep. They pulled me out and injected some dye and then back in and I was back asleep. I guess I was tired.

We asked the guy who did the MRI how it looked and he said "I just take the pictures." He did say it was a good quality film though. Brian thought he was letting us know that there was nothing on it. Anudge is as good as a wink, you know. I thought he meant I wouldn't have to re-do it.

The next day I went to work. The doctor had said I probably would not hear until Friday. I knew I would be in Cambridge then so what could I do from there. I taught first period and then there was a class in my room. I did not take my phone with me because I was not expecting a call or subconsciously I did not want a call. When I went back the doctor's office had called three times. The message said, she wanted to see me right away. "This can't be good," I thought.

Mojo's bracelet got here today

I have to say the note she wrote and the items on my bracelt really fell me with more calm than I have felt since this whole thing started. I keep joking about the negative outcomes but my energy is needed elsewhere. I know that now. I promise to focus on the positive from this point forward. Here is the link to Mojo's eBay site http://myworld.ebay.com/mojoanmagick/ Such positive energy.

I do need to go back to my recap of the last few weeks because so so much has happened.

Feeling a little blue today

Went to former student Daniel E's 21 st birthday perty tonight. So great to se what a fine young man he is. Luke R also there such a surprise. We spent the whole time talking and of course after I left I thought of all these stories about him I could have told him. Anyway it made me happy and sad that they have such fond memories of my classroom and I am feeling so afraid for the future. My future. I guess I need rest now.

The MRI hassle

I saw a neurologist on Monday no biggie same touch tests, numb here? yes. here? no. Walk a straight line - actually a little harder than I thought it was. Dr. M hardly seemed alarmed and said I needed an MRI "sooner rather than later" but not an emergency. She said the receptionist would take care of it. J was not as helpful. I was told and have since had this confirmed that it take a week before my insurance company will okay an MRI. I was scared and impatient and kept trying to speed things up. I had already taken Friday off to go to see Sachi for Junior Parent's visiting weekend.I made the appointment for Wednesday and waited for approval. Tuesday I was worse blurry vision, nausea, so I called J and Dr. M. Well let's hope they approve that MRI soon. Wednesday I start tripping (no for real in the middle of the Olympiad morning meeting I fall down). Dr. M has me come in and says there is no change in the physical exam results. I told her I really am not a hypochondriac and she says it's okay lets hope the approval comes through. I check in with J who tells me she is leaving at 1 so if she has not heard by then I will have to cancel the appointment. Isn't there anyone here who can take the call after you leave? Oh yes I guess so. The appoint is for 3:30 so I go back to work and wait around.

Recapping the last couple of weeks

President's Day weekend, I went away with the girls skiing. I skied and they boarded. The last time I skief was with an ex in Utah and it was a horrible experience. Being many years later, I did not expect to find myself stronger, more full of energy or endurance, or any more reliant so I was a bit worried about what I was getting myself into. My friends are young workout types whereas I am sit on the couch and knit all day. Needless to say, I had a fabulous time. I took a lesson and the instructor was very kind. (The instructor in Utah made me cry.) I skied a lot and was tired without feeling beat up. I was later sore but not as sore as I'd anticipated. I start with this story because I think it was the last time anything felt normal.

Later that week, the headaches began. Beyond any kind of pain I had ever felt. I thought they were tension headaches because they came at the end of the day but they did not respond to even three, then a couple hours later three more Advil. I even resorted to some Naproxen I had leftover from gum surgery. The headaches came and went for about a week but I guess I just still thought they were tension headaches. I am a tense person with an intense job. Then on Thursday, while I was teaching 6-2, the headache got weird. It was only on the left and my face was kind of tingling. I found myself very impatient with the kids because I could not really focus on what was going on. Was I having a stroke?

Because the pain had receeded and the tingly numbness was intermitant, I brushed it aside. I thought a call to the doctor would be premature. Friday late afternoon I called and left a message and I figured that would be enough. The fact that she called me right back and told me to page her any time made me a little bit worried. Could this be something serious? Nah!

Saturday morning the numbness was worseso I paged Dr. O. She sent me in to the office to see a colleague even though the office was technichally closed. After a few balance and touch tests he told me to se a neurologist on Monday.