Craniotomy two years later

Mother’s Day weekend is the anniversary of my craniotomy. I haven’t thought about it much in this past year because I’ve been preoccupied by the loss of my son.

Since the anniversary is here, I thought I’d post an update. My hair has grown back as much as it probably ever will. Last year, there was still a slight separation at the hairline from where the incision had been. That is no longer noticable. My hair doesn’t naturally part at the incision any more. However, if I pull it back there are bald spots that will always be bald.

The scalp along the incision line remains dry but my scalp is not as itchy as it used to be. There is a slight ridge and some dips on my scalp and on my forehead but I’ve gotten used to the new texture of my head. The feeling still has not returned at the top of my head. I don’t have full control over the nerves on the upper right side of my face. When I raise my eyebrows, I can feel the left go up but not the right. The muscles on the right side of my face seem to pull the right side up slightly so it looks fairly normal.

I have had no further symptoms that sent me to the doctor two years ago. I’ve only had a couple headaches, much fewer than I used to. But those headaches are usually very painful and seem to be located behind my right eye and sinuses.

Overall, I feel really good and the craniotomy seems like a far away dream.

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One Year Anniversary…Part 5

Three days after being in the hospital, I came home. That is amazing to me because I spent three days in the hospital after having my son, Ethan. I was glad to head home. The constant interruptions, from nurses doing their rounds to housekeepers vacuuming in the middle of the night, kept me from sleeping for any length of time.

The drive felt endless. I kept my eyes closed most of the time because the visual stimulation from looking out the window and the light, made me nauseous. My good spirits following the surgery had vanished, and I was getting grouchy. Now that the morphine had completely disappeared from my system, my head ached. I couldn’t lay flat on my back because it caused intense discomfort. So, I slept while sitting up. My face was puffy and discolored.

I tried to be somewhat friendly when I got home, but mostly I wanted to be left alone. We had a chair tucked in a dark corner in which I took permanent residence. David bought me some earplugs. The kids stayed as quiet as they possibly could considering they were five and two. The funniest picture Mike took was of the happy face balloon hovering over my not-so-happy face.

Now, a year later, the ridge from the incision has almost entirely flattened. My head is still itchy and dry. I recently visited a salon for recommendations to correct the problem but nothing has worked yet. The beautician recommended keeping my hair longer because I have noticeable bald patches when my hair is pulled back. The heightened sensitivity is gone. I have occasional headaches. I feel back to normal. Except the weight I gained while being inactive hasn’t disappeared.

In a couple weeks I have an MRI scheduled to see if everything looks OK. The day I made the appointment, I had that old sick-to-my-stomach feeling. I guess it’s a post traumatic thing even though I would never say that the surgery traumatized me. My mom feels it too every time she goes in for a colon cancer check. It’s been four or five years now. She’s having a colonoscopy as I write. Even though every checkup has showed her to be free of cancer, she gets nervous about what the test will show. I think it’s a little bit like being cheated on by a spouse. You go through your life trusting in your good health until something happens. Then you never fully trust it again.

For me, this day one year later is less difficult, but I am reminded about health. My son’s school called to say he’d been sick all over himself and had a belly ache. I picked him up, and he reeked. The poor kid stayed in bed watching movies while I did homework and grading, and finished up my volunteer PR work.

It’s not easy watching your child battle an illness. A friend of a friend just lost her 18-year-old daughter to Leukemia. My daughter’s preschool teacher continues to balance work and regular mom duties with medical appointments and surgeries for her toddler son, who has had serious kidney problems. Last week he had another emergency surgery when his abdomen filled with urine. The school’s parents and fellow teachers are trying to keep her refrigerator stocked and do what little we can to make her life easier as she helps her son recover. One of my daughter’s three-year-old classmates has had brain surgery several times to remove tumors. He has the pasty, translucent skin of a child who has spent too much time in a hospital. When I see so many people coping with health issues, I am surprised by how oblivious I once was to it all.

For anyone wanting to read a moving account of parents dealing with a child’s chronic illness, I recommend a series of articles by Diana Sugg of the Baltimore Sun. She won a Pulitzer in 2003 for her stories. They are hard to read because they so effectively capture the tiny details and emotion that put you in the moment. In particular, I found “Present at Loved One’s Last Moments” to be especially moving. WARNING: Have tissue handy when reading.

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One Year Anniversary…Part 4

What more could a mom want on Mother’s Day than to lay in bed all day, have meals prepared for you, no dishes, people asking how you’re feeling, a few hours to yourself without the yelling and bickering of children, full control of the remote? Spending Mother’s Day recovering from brain surgery in the hospital is all that and more. I certainly can imagine worse days, like having an absentee husband, and being responsible for entertaining the kids and your mother-in-law, who refuses to participate in anything that costs money and…well, that’s a whole other story. Yes, I am continually reminded that there are worse things that brain surgery.

On Mother’s Day last year, the nurse removed most of the tubes and connections. I was a puppet liberated from the strings. No more catheter. I could walk to the bathroom. The nurse also gave me a hat made by kindhearted volunteers. My hair was a knotted, bloody mess piled in a peak on the crown of my head. The incision ran across my scalp from ear to ear and formed a ridge darkened with blood and dark stitches. Pretty gruesome. My kids, especially my son, were fascinated and frightened by it. My parents drove the kids up from Athens for what turned out to be a very brief visit on Mother’s Day. I was thrilled to see the kids and worried about how they would react when they saw me. They were somewhat standoffish but less so than I expected. They brought me a nightgown for a present.

Despite being confined to a small room filled with gadgets and buttons too tempting to resist and being told to stay quiet, they behaved reasonably well. But the sound of their voices felt like daggers in my brain. High. Loud. Piercing. Still tired, and extremely sensitive to light ( I kept pulling my hat over my eyes), I finally had to ask them to leave and felt very guilty for doing it.

In past years when we lived in Sacramento, we spent Mother’s Day at the county fair. At the free event, carnations were passed out to all the mom’s. Both David and I love fairs — the animals, the crafts, the food, the rides. One of our first dates was to the California State Fair. I went into labor when I was carrying Ethan at the state fair and then brought him back as a newborn the following week. Ava went to her first state fair when she was a week old. Until we moved, we faithfully attended the fair every year and usually spent at least two days roaming the fairgrounds because there was so much to see.

So, that day in the hospital I was nostalgic for the past.

This year, David made breakfast. I opened my gifts. The first was a portrait of the kids in a beautiful picture frame. The second was a tiny video camera. Then David headed to work. I took the kids to the grocery store, had lunch, and then we went to Chuck E. Cheese’s for two hours of loud noises, whirling lights, and general over-stimulation. It felt a little bit like my recovery last year.

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One Year Anniversary…Part 2

Last year we arrived at Riverside Methodist Hospital in Columbus before the sun rose. There was already quite a crowd in the waiting room. Large mounted screens indicated the status of patients. My hospital experience to date had been limited to giving birth to my children. So, I was surprised to see the assembly-line efficiency of the surgical process. We had been told my surgery would be in the morning, but at the hospital we learned I’d be taken in the afternoon instead. After a relatively brief time, an older, quirky nurse with spiky hair and colorful glasses took us to the staging area. She looked ready for a punk rock concert, and 30 years earlier was probably a mosh pit regular at Sex Pistols and Ramones’ concerts. I should have asked her what senior citizen punkers do for fun in Columbus. She seemed like she’d be fun to party with even in her 60s.

The staging area was a linear version of an emergency room, rows of gurneys separated by curtains. It reminded me of an airport terminal. We were the planes waiting our turn for departure. Behind each curtain lay someone in a bed, most often with family visiting until they were wheeled away. I changed into my gown and visited with David and Mike, who was taking pictures. Although we stayed in this room for hours, chatting, the time passed quickly. I was amazed by how quickly.

The room cleared of patients except for me. Then it began filling again with new patients. After a while, a nurse came to cut my hair. She explained that very little hair would be shaved, only a small strip for the incision. She pulled out the razor. I joked until I cried because the surgery suddenly became very real.

Then I was sent to have another MRI. Not much later, the guy with the good drugs stopped by. I figured he must be the most liked person in the hospital. Whatever he gave me, I couldn’t keep a smile off my face. Eventually, the drug made me drowsy. I certainly wasn’t stressed about the surgery.

Then it was time. I didn’t care. David said goodbye, and I was wheeled into a large room. Again, I was surprised because on television operating rooms look like these cozy, antisceptic places. This room was cluttered with equipment. The medical staff bustled very efficiently. It’s a world most of us never see, and I wanted to hang out on the side and observe. Right after entering, a mask was put over my face. I don’t remember much during the surgery. At one point, I think I was wet, and they rolled me to the side to change the sheets. The doctor said I joked a bit. I’ll have to take his word for it. Hopefully, I said nothing to embarrass myself.

David had the hardest time. I was unconscious. He went back to the hotel for a while, read, worked on the computer, slept, watched Andy Griffith, talked with family, got updates from the doctor. It was after 9:00 p.m. by the time they brought me to the hospital room. I remember being persistently told to open my eyes by the nurse or doctor and they shone light in my eyes. This continued throughout the night as the drugs started to wear off.

Today is such a contrast to a year ago. Ava’s preschool called and asked us to pick her up. She’s running a high fever. A couple of the teachers are babysitting to give parents a night out. I’d planned to meet David and have dinner together, but now it looks like I’ll be nursing a sick child. I expect I may be taking her to urgent care tomorrow to check on a possible ear infection. The rest of my day was spent on homework and trying to collect donations to help raise funds for a veteran with Type I diabetes who needs a service dog.

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One Year Anniversary…Part 1

Today was an almost exact duplicate of this same Thursday, one year ago. I went to class. The weather in Ohio, though, was much warmer and sunnier than anything I’ve yet to see in cool, overcast Oregon. After school my mom and I picked up Ethan and walked him home. He was shorter, with chubbier cheeks. Now, he has the leaner look of an older boy. Ava is also in school. So, today I picked them both up.

Last year when I arrived home, I packed my bags, tried on some hats and wondered how much hair I’d have by the end of the next day. David and I waved goodbye to the kids and set off on the drive to Columbus. We were grouchy, irritable, tense. Today I only spent a few minutes with David before he left for work. After I got home, I made dinner, tucked the kids in to bed, and did school work.

Last year, when we arrived in Columbus, we had a wonderful dinner at Mexican restaurant with Mike DiBari, whose pictures I’ve included. I spoke with my brother on the phone. He wished me well. David, Mike, and I walked to the movies and saw Spiderman 3, not the best movie, but considering my state of mind, mindless entertainment seemed best.

Last night, David and I hired a babysitter, went to dinner, and then saw Iron Man. Perhaps, we’re starting a new tradition — superhero movies around May 8. Having a date night was a special treat, and it was only a coincidence that it happened to be around the one-year anniversary of my surgery.

I didn’t want to go to sleep last year after the movie. Who could sleep anyway? We had to be at the hospital before the sun rose, but my anxiety prevented me from sleeping. Although I knew the risks were minimal, I couldn’t help thinking about all the possibilities.

So, here I am, one year later, immensely grateful for the time with my family, thrilled to be debating issues about the media, politics, business, feminism, and happy for the opportunity to help others.

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Nine Months Later

It has been nine months since I had brain surgery. I thought by now I’d have more hair. So far, it has grown just long enough to stick up on top and slightly feather back on the sides. Not pretty. I’ve thought about cutting the rest of my hair really short, but I have permanent bald patches that are nicely hidden now.

The first time I stopped wearing the head scarves in August 07, my hands constantly smoothed my hair down. People must have thought I had a strange nervous tick. Even today, I rub my scalp quite a bit. It’s much drier than it used to be along the incision line. It has ripples and bumps that did not exist before. There is little feeling on top, and it occasionally itches. Nine months and it still doesn’t feel like my head.

The other day, despite my best efforts, I couldn’t get my hair to cooperate, and I put a scarf back on. Several people made comments, positive comments, and did double takes. Besides women in their 90s and cancer patients, who wears scarves? The scarf made me feel too conspicuous. I need to do something with my hair, though, because I’m still very self-conscious. Every time I look in the mirror, all I see is Elmo having a bad hair day.

At school it was inevitable the tumor would come up. I believe the story had traveled from Ohio to Eugene via chatty professors before I arrived. That doesn’t bother me. It’s not like I’ve been secretive about it. The story lives in the blogosphere for anyone to read. But it’s one thing to write about it and remain fairly anonymous and another to speak directly to someone and watch their eyes slide away, their fingers fidget, and their conversation dry up to a few hmms and ohs. I prefer not to make people uncomfortable. Sometimes, however, I think they’re struggling with themselves. They want to hear it. But they don’t want to hear it. I understand.

My story inadvertently was announced in class during a qualitative analysis exercise. We, the students, interviewed each other about why we chose to attend the University of Oregon. I didn’t lie. My health was a major factor. We transcribed the interviews. Then the instructor compiled the transcripts and handed the packet out to everyone to practice coding. We didn’t realize our interviews would be shared with everyone. I’m not criticizing the instructor, I just wasn’t prepared for everyone to read about my brain tumor in class at the same time. I kept my head down to avoid seeing anyone’s reaction or quick looks.

Now the word is definitely out. Nothing has changed, though. The people here are really wonderful. If anything, I suppose it allows me to make comments about my goofy hair or to make cracks about how graduate school gave me a brain tumor without having to tell the entire story.

I’ve been thinking a lot lately about where I am, or more precisely, the fact that I’m still here. Maybe it’s because I’m nearing the one year mark. Maybe it’s because I’ve decided to do some research that brings me into close contact with others going through a similar experience. It certainly reminds me that I need to go to the doctor for a checkup. But I’m afraid. Even though I know it’s just a checkup and no big deal, it feels like I’m supposed to walk to the edge of a rooftop, stand with my toes over the edge, and look down.

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Fate, Luck, Destiny?

This evening I’ve been poking around online in a preliminary investigation for a potential research project on how people with health conditions use the Internet to cope, and I came across an announcement about a woman named Beth Younggren Glassman, who died in February after battling brain cancer. The similarities of our lives rocked me. We are the same age. She was a television reporter and anchor as I was. She had two young children. She was also diagnosed in early 2007.

But I got lucky. She spent the year undergoing chemo and in failing health. I spent the rest of the year complaining about how my hair was growing back and worrying about the hundreds of pages I had to read for class.

It’s amazing how the Internet can connect people who have never met and never will meet. Beth sounds like she was an amazing woman, a strong woman, devoted to her family and well loved. Her life and her motto to pay it forward is a reminder to avoid getting caught up in trivial matters and remember what is important — not just for ourselves but for the other people in our lives.
It’s ironic that today I also learned that my friend Yria gave birth to a beautiful daughter — another precious gift to this world.

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Audio-Visual Story Posted

Michael DiBari, the photojournalist who was my family’s shadow throughout our close encounter with the brain tumor, has posted an audio-visual slideshow of the project http://oak.cats.ohiou.edu/~md285806/lisa/

Considering that he took more than 3,000 pictures, I was impressed he managed to condense his work into a two-minute presentation. He said the story made one person, who had lost a loved one to a brain tumor, cry.

I’ve wondered if terrible illnesses are harder on the patient’s family and friends than on themselves. Family members can only imagine what the patient is feeling. As the patient, you know exactly what hurts and how much it hurts. You are probably also the first to accept your condition and your lack of control over what the future will bring. I couldn’t prevent the tumor from being cancerous. I couldn’t keep the doctor from making a mistake. I couldn’t say where I would be in six months.

I had gotten to the point where I had accepted the possibility of death. I wanted to see my son drive for the first time, my daughter be embarrassed about shopping for bras, my husband finally refurbish a vintage trailer. But the power to deny death was not in my hands.

Such morose thoughts. But my guess is that most people fighting serious illnesses may have them.

I am reading News of a Kidnapping by Gabriel Garcia Marquez. In Columbia, drug lords regularly kidnapped people to be bartered for concessions from the government. Sometimes the cartels released the victims, other times they killed them. I just finished a chapter about the final moments of one woman who was murdered. During the time she was being held captive, she wavered between crazy anger, depression, stoicism and acceptance. In the end, she walked to her death with newfound strength and grace.

A Jewish teenager in Poland during World War II had similiar feelings, according to a newspaper account that cited passages from her diary. She talked about just wanting things to be over, but then mentioned her will to live. She died after being sent to a concentration camp.

I remember that Anne Frank’s diary had a huge impact on me as a child. She endured so much and had such a short life. Even then I began to understand the human capacity to be strong in the face of adversity. Attitude is everything.

Speaking of which, I had to add this picture because I find the contrast between my puffy, bruised face, blood matted hair, and the smiley balloon kind of funny. Thanks to Mike for this picture.

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Stitches Out

The stitches were removed today. Other than the IV, it was the most painful part of this entire experience. The sides of my head are a little tender. I have very little feeling in the top of my head and no feeling in one spot. So, I really felt the stitches as they were being removed on the sides, but the top stitches were painless.

It only took a few minutes, and now I get to wash my hair!!! This is a very good thing. It will be interesting to see how the hair grows back and how quickly I’ll be able to stop wearing a hat. The crusty scabs look disgusting so it will probably take a while before I feel comfortable going bareheaded.

A friend suggested I mention how other people have reacted to the news that I had brain surgery. I didn’t tell too many people before the surgery. There were two reactions from those I did tell — immediate sympathy, tell me about it and how you’re coping, and then there were those who were very uncomfortable and didn’t know what to say. In those cases, the folks usually looked for a quick exit. I can’t blame them. Guys, especially, got that deer in the headlights look.

Since I’ve had the surgery, the most common reaction has been shock that I appear perfectly normal. At first, people stared at my bruises and noticed that I was pale. But my color is pretty much back to normal and the bruises have almost entirely faded. Beyond that, no one really wants the details. In fact, some people seemed to get queasy when I mentioned how the nurse removed the drainage tube from my head.

My photojournalist friend, Mike Dibari, has been documenting this saga and has posted photos on his blog, michaeldibari.wordpress.com. He expects to post an audio and visual presention soon.

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Two Weeks Later

I can’t believe it has been two weeks since the operation. At this time, two weeks ago, I was unconscious with my brain exposed. The recovery is going great. Most of the time, I feel normal. My head itches. The swelling where the skin was stitched has gone down. Right after the surgery it felt like a jagged ridge. Now, it’s almost even with the rest of my scalp. I have no feeling at the top, center of my head. It’s strange to comb my hair and feel nothing. Also, I have no motion above my right eye. So, when I raise my eyebrows, only the left side goes up. I have feeling, it just doesn’t move. It really messes with my ability to glare at my children.

I can move my head up and down without getting as dizzy, although I still have quite a bit of lightheadedness. Hopefully, that will go away before too long. I am scheduled to have the stitches removed next week. I can’t wait. I really, really, really want to wash my hair. And one stitch that sticks out by my ear has been driving me crazy because it itches so much.

Next week is the last week of class. I’ll have to spend the weekend at the library finishing up projects. I’m pretty much back on track with school. The problem now is finding the motivation to keep working. I’m just burned out. Although I love being back in school, I have worked harder and longer hours than I ever did back at my corporate job. Vacation is calling, but I can’t take any time off until after I finish my thesis.

David is planning our trip back to the West. First, if time allows, we’re going to travel around New England — maybe see Niagra Falls. I have to do a presentation in Washington DC in August for the AEJMC conference. That should be fun. It will be my first scholarly conference.

Unfortunately, when it’s over, we will probably have to jet to Oregon. We still have to find a place to live and get Ethan registered for school.

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