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.