Fasten Your Seatbelt

If you have ever imagined an extended vacation from work and fantasized about how long it would be possible to sit around the house in wrinkled pajamas pants eating empty calories while playing on your computer before it became really really tiresome, the answer to that is TEN DAYS.

Day 10 (and 3/4) of Solitary Confinement Project and I am starting to feel the walls close in. Jeff went back to work on Monday so I have been hanging by myself. I have read all of your Facebook pages and commented on your photos, status updates and groups you have joined. I have read (many many) persons' blogs as well as websites about topics I have ever found mildly interesting, or not (history of cheese, anyone?). I have researched every graduate program that exists in the U.S. with the idea that maybe I should get another degree of some sort (on-line). I have researched Fulbright Scholarships & their ilk to see if maybe I should do some sort of study abroad program.

In fact, I believe I may have come close to reading all of the Internet(s). It seems redundant to state that I have had some time on my hands.

Since I may be one of the few people who has now experienced at least 90% of what our information superhighways have to offer, I ask you to consider the following when posting ... to be clear, if you DO blog about the below-mentioned things, I will probably still read your blog, but I will not ENJOY it as much. So consider yourself on notice, Random People I Have Never Met In My Life. Because if I am at home, sitting on my rear, I would very much appreciate at least a half-assed effort at entertaining me.

1. Blogging about how boring your life is, all the time? That is, in a word, boring. My recent life is boring too, that is why I am reading about yours. Please at least have the courtesy to make something up to amuse me!

2. Here and hear and their and there are different words. They are not interchangeable. If you do not know this, and you are over the age of eight and English IS your first language, may I be so bold as to suggest that you should not be allowed unsupervised access to your computer. Because you might be the .000001% of the population that think nothing of using that computer while playing with matches and wearing a jumpsuit soaked in gasoline while balancing a Fourth of July sparkler on your nose. And then you will catch fire and then you will win a $40 million product liability/failure to warn lawsuit against Dell, Mobil, Sparkler Co., and Acme Matchbox. And product liability lawyers are BUSY people - what with Big Tobacco and Big Pharma - they do not need to deal with you right now. I'm just trying to look out for my peeps.

3. Please come up with something else to blog about besides how CUTE your children are, every moment of every day, and HOW MUCH YOU LOVE them. Of course you love them, they are your children, if you did not love them, you would be a terrible person. But ... and trust me on this ... sometimes even cute children that are very loved can be annoying and difficult and give even the best parents a headache. It is OK to admit that and I am deeply suspicious of parents that do not. You can love your children and still want to sell them on Ebay at times (or, at least, short-term lease them while you take a shower).

4. And about those kids, if you are going to post kiddie pics, then please go through the exercise of deleting the ones that are fuzzy or upside down or say things like "First time little Kayla tries black beans!" or (and I am not making this one up) "Little Felicity picks her first scab." A good start would be deleting anything from your camera wherein the central figures are either legumes or solidified bodily fluids (ANY).

5. Puppets do not make good blog/photojournal material. Ever. I will not explain this further.

So ... you see I have had some time to think about the things that really matter in life. The goal was to hear from JH and Pittsburgh about their take on MRI/vision/driving before I got back behind the wheel (still waiting). It has been my experience that the more serious your medical concern is, the more widely divergent two medical opinions will be on the topic. I was told late this afternoon by the Pittsburgh assistant that my scans and reports are on Dr.[page intentionally left blank]'s desk citing some "International Endonasal Conference" as reason for the delay ... if I had a nickle for every time I heard that same old lame excuse! They will be reviewed later tonight.

Consider this fair warning: I am LEAVING the house in fifteen minutes. In a motor vehicle. I am planning on driving 1/8 of a mile away from where I live, in any direction, with the goal of going to a place that is not the inside of my own house. Where does not matter. It may be an Exxon gas station bathroom. I may just drive there and stand in there and soak in the sights and sounds and smells of someplace that, again, is not my house. As some wise person once said, "It is not the destination, it is the journey." Or whatever. I don't really do deep quotes. You get the gist.

So if you live near me and you see a large, grey SUV in your lane and/or heading toward you, manned by a blond woman covered in cookie crumbs and wearing pajamas pants, kindly fulfill your civic duty and move your vehicle out of my way. Because I am very anxious to get to that Exxon and I have decided that it is far more dangerous for me to sit in the house for one more second than it is for me to possibly suffer a second episode of vision loss while driving.

If I do not return within 24 hours, please contact the second floor of Nordstrom and ask for Valerie. She will know exactly where to find me.

Just The Facts, Please

Just spent a solid forty-five minutes on the phone with neurosurgeon from UMD.

Here are key points:

The differential diagnosis from Hopkins neuroradiologist's most recent MRI report is: subependymoma (a rare subtype of ependymoma)

Tumor is measuring 5 by 6 mm - small - about "the size of an M & M."

Tumor is STABLE, at this time.

He is "confident" that tumor is not causing visual changes, given the area in the brain where it is and the size that it is (follow up w/ neurologist to explore sudden loss of vision).

MRI showed no signs of increased intercranial pressure.

Plan: Continued periodic scans - for the rest of my life - no surgery, no radiation at this time. Punting me back to Neurology Dept for visual follow-up. Still waiting to hear from JH and Pitt neurosurgeons.

AND ... FROM A PREVIOUS POST OF MINE ... in case you really like to read:

©2008 National Brain Tumor Foundation / Call Us for Support 1.800.934.CURE

Ependymal tumors begin in the ependyma, cells that line the passageways in the brain where cerebral spinal fluid (CSF) is produced and stored. Ependymomas are classified as either supratentorial (in the cerebral hemispheres) or infratentorial (in the back of the brain). Variations of this tumor type include subependymoma, subependymal giant-cell astrocytoma, and malignant ependymoma.

Characteristics • Usually localized to one area of the brain• Develops from cells that line the hollow cavities at the bottom of the brain and the canal containing the spinal cord • Can be slow growing or fast growing • May be located in the ventricles• May block the ventricles, causing hydrocephalus (water on the brain)• Sometimes extends to the spinal cord • Occurrence peaks at age five and again at age 34• Accounts for two percent of all brain tumors.

• Severe headaches• Nausea and vomiting• Difficulty walking• Fatigue and sleepiness• Problems with coordination• Neck pain or stiffness• Visual problems

The doctor will perform tests to determine if it has spread to the spinal cord. Surgery followed by radiation therapy is the usual course of treatment. A shunt may be needed to treat hydrocephalus caused by blockage of the ventricles.

The over-all five year survival rate is approximately 50%. Supratentorial epenedynomas, however, are generally more aggressive and have a poorer prognosis. Studies of prognostic characteristics in ependymomas are limited by the rarity of this tumor. Most studies are reports of single-institution experiences with few patients. The Mayo Clinic (Rochester, MN) experience with 80 patients represents one of the largest single-institution reviews and was published by Schild et al. Seventy of the patients had low-grade tumors and 10 had high-grade tumors. Prognostic factors favorably associated with survival included tumor grade, location, and histologic subtype (myxopapillary vs other ependymomas). Survival did appear to be somewhat improved in patients who had more of an extensive resection, but this was not found to be significant on univariate or multivariate analysis. All of the patients in this review did receive radiation postoperatively, and the 5-year and 10-year actuarial survival rates in low-grade tumors was 87% and 79%, respectively.

High-grade tumors did not fare as well with a 5-year survival rate of only 27%, with a high rate of local (80% recurrence at 5 years) and leptomeningeal (41% at 5 years) relapse. Guyotat et al. reported their experience with 34 adult patients. They found that anaplasia and location dictated outcome. None of the 17 patients with anaplastic ependymoma survived 5 years, whereas 90% of patients with fourth ventricle tumors (most grade 2) were alive at 10 years, and lateral ventricle tumors had a 10-year survival rate of 60%, whereas patients with third ventricle tumors had a 35% 10-year survival rate.

The Patient Patient

Eight doctors appointments, three separate trips to three different hospitals, an ambulance ride and one MRI in seven days.

Oh, and one Xanax. Cannot forget that Xanax. I was stressing about my MRI and my mom offered me the last of hers to take at the hospital "as long as I promised not to waste it." Which I did not. That is love right there. Thanks Ma!

So my driving privileges are not yet reinstated and I still have no answers. Other than my (extensive) list of doctor visits, I have not really left the house in eight days. EIGHT days. Wait, that is not true, my dad drove me to Filene's Basement this weekend so I could buy some slippers. Which was FABULOUS. Also because I was a good girl and did not cry for the IV, Jeff took me out for french toast after my MRI ... but I don't really recall all that much from the experience because I was still Zanny'ed up (Thanks, AR, for my new favorite nickname).

So the neurosurgeon from Hopkins called my cell this morning before 7 a.m. and I missed the call. I MISSED THE CALL because I was asleep still and my phone was downstairs. And what super-over-achieving doctor calls before 7 a.m.? Ethan does not even get up until 7 a.m. I treasure my sleep (apparently more than my brain scan results).

I called back soon thereafter but he had already left for the O.R. At about 4 p.m., I called back again and spoke to the neurosurgeon's assistant. She told me he was STILL in the O.R. (what the hell is going on in there - a head transplant?), so unfortunately, he would likely have to get back to me tomorrow.

When I sounded panicked and told her I had been in the hospital and could not see well, she honestly, did not sound that impressed by my plight. She did concede that she could email him and leave him a note to follow-up with me tonight, if at all possible. I then realized that assistants in this field are not all that impressed when patients complain about being a big mess and worrying about something life-threatening because ALL of their patients are a big mess and worrying about something life-threatening. Take a number.

So I spent all day waiting by the phone to hear the results for naught. Except when I was eating cookies. Or calling my husband to report that nobody has called me yet. Or calling back three minutes later to report still no call. Or now, one hour later. Or pacing back and forth in front of the bathroom because I did not want to take a pee break in case the phone rang. Or eating more cookies. Or doing a little light stalking on Facebook. Other than that, I sat by the phone and waited patiently.

I felt like the neurosurgical equivalent of the classic He's Just Not That Into You woman. I was one step away from calling all my friends and whining, "Why? Why didn't he call!? He SAID he would call! Should I call him? NO! ... No? Are you sure? ... Maybe he lost my number? ... Maybe I should email him? .... No? ... I mean, I guess he IS busy at work ... Right? RIGHT!?" and then putting on slutty patent leather boots (you know the kind) and going out to get trashed on cosmos and multiple buttery nipple shots. (Shout out K and L). After which I would call him anyway, slurring, "I thought I meant something to you! Or do you say that to ALL the girls with intraventricular tumors and potential hydrocephalus?" And his wife would hang up on me and then block my phone number.

But before it got to that point, I asked nicely and requested that maybe if the surgeon got a break, he could call me tonight. Ya know, if he got bored of his 12-hour surgery and wanted to wash that cerebellum off his hands and get a snack or something. It's OK - I don't mind if he talks with his mouth full - I was, in fact, raised in a barn! Or if he was busy, he could even just send me an email with either ( - : or ) - ; in the subject line. All I need.

The assistant DID tell me that the MRI had been read by the radiologist and she had the report on her desk. Of course, she could not tell me what it says. I have to talk to the surgeon about that. Hmm. I briefly debated calling Hopkins MRI to fax me the report but I have been down that road before and I, personally, recommend never ever reading your own radiology report before you talk to a doctor. Sometimes it is better than it sounds and Wikipedia will do you no favors on this front. You will spend an obsessive night (or nights) convinced you have four hours to live. Or maybe that is just me.

Alright this entire post makes me sound INSANE (- r, than usual), but what can I say? I am a little frayed around the edges right now. And if the shoe ... or slutty boot ... fits ....

Now if you will kindly excuse me, I hear some cookies calling my name.

Treat 'Em and Street 'Em

Watching the sun come up over the waves of the ocean, snow-covered mountains, six-hundred thread count linens at a five-star hotel with mimosa in hand ... all worthy endeavors. Watching the sun's first rays hit the ER parking lot after an ambulance ride and a night spent in the hospital is, however, a life experience I could pass on.

I apologize if this post is full of typos and such. I am literally squinting at the computer screen. I may have just typed squidding at the pewter tween but I cannot be sure. But my vision is just starting to improve and I have been itching to get to my keyboard and type something I could proofread, even just a little. What can I say, proofreading calms me.

First some Good News: We have just emerged from the month-long holiday coma brought on from too much food, drink, and merrymaking. I would like to say that I let go of all expectations of having a "perfect holiday" and just relaxed and enjoyed all aspects of a MAGICAL season but that is not really my speed. I did, however, manage to tone it down a notch and tried to do less presents, fewer expectations, more joy (or more eggnog, which is really the same thing). Considering I was not sure in November 2007 if I would kick it before Holiday 2008, I consider this year extra credit.

A big thank you to the M family for hosting a fabulous Thanksgiving feast. Great hosts, great food, better company. We all enjoyed it so much. Cost of two premade pies that I managed to burn (apple) and undercook (pumpkin): $20. Not having to stick my own defenseless arm into a naked turkey cavity and pull out a sack of juicy alien turkey bits: Priceless.

To the other M family, as always, it was so good to celebrate with you on Christmas Eve. We love our party tradition and hope we keep it up for years and years. Our one disappointment this holiday was that nobody got caught making out in front of the bathroom, but there is always 2009.

Much gratitude to the S parents for cooking a Christmas dinner consisting strictly of meat and potatoes so that Jeff did not die. Since I organized a Christmas Eve menu of vegetarian offerings, we were all more than a little concerned that Jeff would not survive until Christmas morning on only eggplant. If my husband had a dietary slogan, it would be that Meat is Murder ... Tasty Tasty Murder. So thank you for bringing his lipid blood levels back up to a healthy 96.99% on Christmas Day. He was starting to look a little pale.

Finally many thanks to the E family for hosting the entire family at your New Year's Eve bash. We had so much fun in your gorgeous home ringing in the New Year with all the little noisemakers (pun intended). You throw a great party and we were thrilled to be a part of it (don't let the sleeping couch lump indicate otherwise, midnight was way past his bedtime).

Now The Bad News: It genuinely never occurred to me that even if doctors declined to operate on the brain tumor that, at some point, emergency brain surgery might be needed to mitigate complications from the tumor, such as internal bleeding or increased intercranial pressure. Murphy's Law of Being a Patient dictates that this will happen at 2 AM on a Saturday.

I suppose by definition brain surgery should be considered "emergency surgery" but there is scheduled brain surgery as in:

"We are going to resect your tumor. Here are the risk/benefits. Do you have questions? Go home and pack your bag."

VS.

"Holy shit! You need to come in RIGHT THIS SECOND and we are going to open your skull with a spork and a nail file and give you a leather strap to bite on for the pain! None of our surgeons are here now but our janitor is very bright and we are pretty sure he can handle it once he finishes unclogging that toilet!"

This past weekend, I had been feeling off and exhausted for quite awhile. I attributed it to the fact that the kicking, writhing, snoring five-year-old that visits Jeff and I in bed at 4 a.m now has a rather bulky accomplice in his new stuffed child-sized T-Rex and there is no room at the bed inn for me. Thanks Santa! Note: I did not think about sleeping arrangements when I bought him (the giant dinosaur, not the kid). As penance for my lack of parental foresight, I feel like I have forfeited the right to complain about the whole situation.

Saturday arrives and I am feeling like the Grim Reaper and my vision is blurry. Normally I am 20-20 but suddenly it seemed like everything was covered with a grimy film. I was squinting at words on my computer screen and watching TV was giving me a headache. I suggested maybe I needed some fresh air so we drove to a local park and went for a walk through the woods. My husband noticed I was off because I was so alarmingly quiet.

I had plans that evening with one of my favorite people to meet at a restaurant for dessert after our kids were in bed. While getting ready, I was feeling a little wobbly but Jeff encouraged me to go, thinking a night out would perk me up. I left the house and once I was lost en route (a common occurrence even before brain issues) - and late - I discovered that my Blackberry was not working. Insert your favorite curse words here; this is an interactive blog. My poor friend was waiting patiently on me while leaving semi-threatening voicemail that I could not listen to until later. Sorry G!

Dessert was painful. I was feeling awful and conversation was difficult for me. We left and I realized once I was back on the road that I could not make out the street signs. I could not READ THE SIGNS. I could see them but could not discern the words or letters. And I had NO PHONE to call for help. Awesome. And I was all out of curse words, so I took it to the next level and burst into tears, which did not help the sight situation.

I tried my best to get pulled over. Ironic because several weeks before I got a ticket for going forty-something in a thirty-something and had no idea I was even speeding seeing as I was leaving my house in a hurry because the carbon monoxide monitor was going off. But that is a different post.

I pulled over on the highway and put on my hazards and sobbed. And waited ... for help? What do I do? It was clearly not safe for me to be driving but it was 10 pm and I had no cell phone and no On-Star and no clue what to do. I did not want to pull off on an exit because I had no idea where I was and did not have any phone numbers without my phone. So I waited and waited and waited and no police. I gave up and drove the entire way home, sobbing, with my hazards on, going no more than 20 mph on the highway.

I made it home and came in and told my husband, "I cannot see. I think we need to call the neurosurgeon."

And he was all, "Are you sure?"

Because he knew calling the neurosurgeon would mean going to the hospital. You don't call a neurosurgeon at 10 pm on a Saturday night unless you really, really, really want to go to the hospital. Because they are mean like that and will make you. And my husband knows that despite the fact that I have a dossier full of medical notes and MRI scans, I would rather be flogged by raw pork chops and forced to wear purple Crocs in public for the rest of my existence than go to the hospital in the middle of the night on a weekend.

I am a manic needleaphobe and bloodaphobe and the hospital sends me into such a tizzy it takes days to recover. When I found out I was pregnant, I immediately began worrying about 1) having to have an IV during labor 2) a needle in my spine during the epidural and 3) the fact that childbirth is bloody and I thought I would pass out in the middle and then I might have to have even more IVs and spine needles! It was all I talked about for months. Until about the sixth month when I read a book about what can go wrong during pregnancy and then I started worrying that because I ate tuna sashimi three years ago, my baby would be born with flippers (he wasn't). You can see why my husband is so eager to knock me up again.

But back to Saturday: I go upstairs to wash my face (this made sense at the time) and my husband calls the neurosurgeon. The neurosurgeon on call is not the doctor who has been following me and when he calls back I am pleased to find out MY REPORTS ARE MISSING FROM MY CHART. Are you kidding me? I mean?! So he gets the three-minute cocktail party version of my diagnosis and current symptoms.

His response, "I need immediate evaluation ... blah blah ... the concern is that the tumor is changing ... blah blah ... or hemorrhaging ... blah blah ... intercranial pressure ... blah blah ... come in right away. How long until you are here?"

There is some discussion of calling an ambulance but since we live thirty minutes from UMD, he said local ambulance service will not take us that far, so the determination is made that if my husband is alright to drive, he can drive us and I will be admitted through the ER.

I took this in stride and started packing my purse with my standard hospital necessities. Antibacterial hand gel. Check. Insurance card. Check. Defunct cell phone. Check. Granola bar (though I have been instructed not to eat or drink in case there is surgery, I pack it anyway because I am an optimist). The only remaining detail is the sleeping child upstairs, who at last check, does not like to be left home alone.

I called my mom and report calmly, "We are on the way to the hospital. My vision has suddenly declined and my tumor might be changing or bleeding and I need to be seen right away."

She replies that she and my dad are on the way to stay with Ethan and do I need anything?

"No." I say, "No. I'm good ... and ... just ... rmaspolxxmsmd ... [sobs] ... or arjdmicmcxaoakd ... and ... smaicdollllmphhhhhhhhh. OK?!!"

I am still not sure what I was trying to get out but it was probably the middle-aged equivalent of I WANT MY MOMMY!! Jeff is downstairs gathering all my brain scan films and medical records and hears the commotion and comes upstairs to calm me down. And I am all snot bubbles and red eyes and feral animal noises. Because it has just occurred to me that I might need EMERGENCY BRAIN SURGERY. Like ... tonight.

Before we left, I make it clear to all present that if I have to have brain surgery, I am to be transferred to Hopkins. Got that - Hopkins! Not UMD. Hopkins has a better program. They can LOOK at me, but no letting UMD cut (a minor detail I had never considered until that very moment). After repeated assurances and a quick bed check on Ethan, who through some miracle was sleeping peacefully through all of the phone calls and keening and inhuman noises, and off we went.

Now, if you have never had the pleasure of going to a big city hospital in the middle of the night on a weekend, let me tell you ... gunshot wounds, signs all over the place telling you to remove your jackets (in case you are packing heat, I guess?), bloody footprints all over the filthy linoleum. I take a seat with the bleeding masses and start rocking back and forth as Jeff checks us in and tells triage the neurosurgeon on call is expecting us.

Then we wait ... and wait ... and wait. Jeff checks with triage again telling them I am feeling worse and we are still waiting. More waiting ... after consulting with the triage nurse on a time frame (where IS that flippin' neurosurgeon that so urgently needed to see me?) we end up taking an ambulance to Howard County General with the decision that I need to be evaluated and that if I need to be transferred back to UMD for surgery, so be it.

The ambulance ride was relatively uneventful, as far as ambulance rides go. Though I swear one of the paramedics was flirting with me because he told me to bring my son to the fire station for a tour, which I think was only because he thought I was hot. What with my swollen tear-stained face, pajama pants and matted hair, I was hard to resist.

Howard County was a relative spa compared to UMD. And quiet. The ENT saw us right away and called the neurosurgeon at UMD (I don't think he was too pleased we left in pursuit of less urban and more mellow medical pastures). After evaluation, it was determined that I was stable and not in acute neurological distress and we were sent home, many hours later, at 7 am with instructions to follow up with my "real" neurosurgeon the next day. Also, see an ophthalmologist.

As a result of all this, my brain MRI has been scheduled at Hopkins this week (I was due in December anyhow, so am a week or so overdue, we decided to wait until after the holidays, assuming symptoms remained the same).

I saw the ophthalmologist today. My eyes look structurally healthy (yay?) so more neurological tests tomorrow to see if the visual problems are due to increased intercranial pressure. If so, that will need to relieved with a shunt. In my head. I imagine that hurts more than having a filling put in a tooth but I cannot be 100% certain of that. I do think you may get some good drugs with a head shunt. I am trying to look on the positive side. More later ... on work, boob, life. But now I am tired ... so it will have to wait.

Random Nibbles

The Kid:

My husband took our son to school the other day. I woke up and there was a message for me on the table. It was scrawled in multi-colored crayon, handwritten in his best approximation of that little-known MS Word font, Ransom Note:

Can I geT a ponee ?

I will built it A fence.

I was amused. I mean, my husband was not an English major, but still …

Cleavage and Emergency Medical Treatment:

Still intact. I had lunch with my mom last week and was falling the F apart. I had stuff going on at work, stuff going on at home, and just could not cope, right now. Just could not. She told me maybe I should just take a week off. One week would not make much of a difference one way or another, right? Just give myself a week with no medical appointments, no lab tests, no phone calls to doctors. Just pretend everything is OK and then re-tackle it next week. I told her that was the best idea I have heard all year.

On day seven of my self-imposed health sabbatical, we had planned a family trip to the zoo and instead took a family trip to the ER. For Ethan this time! It was nice to mix it up a little. Ethan had surgery for an inguinal hernia about two years ago and was experiencing severe pain in the same spot where the surgical repair had been. And he could not walk.

Jeff woke me up to inform me that, "We should call the doctor because Ethan cannot walk."

"Define for me 'cannot walk'?"

And then I heard Ethan howling at the bottom of the steps because he was stuck.

"WHY DIDN'T YOU TELL ME HE CANNOT WALK!?"

The fine staff of the ER determined the cause was an inflamed tendon in his groin (how that happened is anyones best guess) and would be better soon with rest and anti-inflammatory medication. He gimped around for about a day afterward, but is now back in full commission, illicit couch-jumping and all. No permanent damage done. Except for my eardrums, those may never recover, as a result of those dog-whistle noises he made when they drew blood.

Again, thank you Amazing Health Insurance Coverage, we owe you a giant fruit basket this holiday season.

My Dad Is Older Than Your Dad:

My dad turns sixty this week. My mom and I are throwing a party. By that I mean, my mom is dealing with catering, bar, and inviting all the guests and I am going to the party discount store for a giant 6-0 balloon and maybe, some sparkly table confetti. She is an excellent co-host.

I think the event is supposed to be a semi-surprise. I am not worried about giving anything away with my blog because my dad not only does not own a computer but has a cell phone that he refers to as his "car phone." If you call him on the "car phone", you may leave a message asking him to return the call. He will then call you three days later and tell you that he heard his phone ring on Tuesday, was it you who called? He is not the person to try and contact if you are bleeding in a ditch and care about being rescued within the next seventy-two hours.

My husband and I are continually entertained by our home phone voicemail. Dad is so uncomfortable with modern technology that it still confuses him when he has leave a message on our automated "machine." He will clear his throat for about ten minutes before mumbling something indistinct and hanging up. Did I mention the man was a national champion debater in college? Yes he was. Just don't ask him to argue with you over voicemail, his head will explode.

That is not to say he is not intelligent … he is very very smart. Two verys. He was a professor at Georgetown Dental for twenty-five years, as well as a practicing dentist. In fact, he was Patrick Ewing's dentist in the mid-80s! He has not stopped talking about it. I suppose irrigating a celebrity mouth is as close as many dentists will get to their fifteen minutes.

What does one buy a technophobic ex-NBA star's oral care technician for such a big birthday milestone? So far I have a set of golf balls (when I first typed this I typed g-o-l-D balls. Gag. I do not want to further explore any Freudian subtext in that finger misfire but thought it was funny enough to mention. Because I have the same sense of humor as most eleven-year boys.) Moving on ...

Perhaps a book about the Kennedy family? He loves that crazy crew! Every birthday/holiday I wrap up a giant tome of 1,000 (give-or-take) pages of Kennedy non-fiction and he acts genuinely excited to receive it. You would think after the 180th Kennedy book, he would have learned everything there is to know about them.

It makes me sad that my dad has to stress about his daughter's serious health issues. He will often call me (from the house or office, never the car) to discuss new curative ideas.

Suddenly he is a Registered Dietitian: "I just read an article about the benefits of an all-organic diet on cancer. Are you eating an all-organic diet? What?! Put down those Cheetos and Red Bull this second, young lady!"

And a Sleep Specialist: "Are you getting ten hours of sleep every night? You really cannot heal if you do not get proper REM. Well, just tell Ethan he needs to walk to school ... a fifteen-mile hike never killed anyone."

And a Radiation Expert: "I hope you are not standing in front of that microwave while you are cooking? Did I just hear a 'beep'?!"

I joke but it is actually sweet. He cares. This has been hard on my parents too.

One More Random Quote:

Do not throw that turtle in the living room!! (Me to Ethan, not my dad to me.)

On Being Dead:

I have a real confession. My latest obsession involves staying up late and reading brain tumor blogs. I will spare you the time and Google search: They all end up dead. You just KNOW some of them are in bad shape when you read their diagnoses and treatment plans. But some of them deceive you. There's one where the woman had written eighteen chapters over the course of seven years since her diagnosis, a veritable Internet book. At her last appointment her doctor told her that the scans were all stable and she "had decades."

I clicked on her eighteenth chapter and felt as though I had been kicked in the throat. It was a eulogy written by her husband one month later. There were no details, just dates and a short memorial paragraph. I wanted to know what happened. It was like having the last chapter ripped out of the suspense thriller you borrowed from the library, but morose and sad, because it is (was) a life.

At night, I go to bed and cannot turn my disturbing inner dialogue off:

IhaveabraintumorIhaveabraintumorIhaveabraintumor ...

I can practically feel it beating through the floorboards of my skull.

I am constantly on guard for strange things that may kill me. If my nose is running, I worry that it is not a cold, but dripping CSF. If I have a headache, is it a hemorrhage? If my vision is blurry, is it pressing on my optic nerve? It can be tiresome. I do not voice these concerns to anyone but my husband, who has become my when-to-alert-the-authorities barometer.

I was half-heartedly watching TV the other night, while reading a book at the same time. My husband had gone to bed half-an-hour before. I noticed after he left that the actors on the show were speaking out-of-sync. Their lips were about one second off from matching the words coming out of them. I watched for about ten more minutes thinking, "I wonder if I should call my doctor? Is this some sort of seizure?"

So I wake Jeff up and tell him, "This is going to sound weird, but …"

"Oh, I noticed it too. It is not you. It is the show."

And I was all, "WHAT? Why didn't you say something?! I was afraid to go to sleep because I was worried I would wake up with brain leaking all over the pillow. And you know these are our good sheets …"

On High School Revisited:

My fifteen-year high school reunion is at the end of this month. I think this should be causing some sort of angst, but so far, it is not (stay tuned: it will). My one concession to vanity is that I bought a new shirt which is likely as far as I will go. I should be dieting, but life is short, or something.

I have attempted to get my teeth bleached but my dentist is not returning my calls (see, "car phone.") I have large teeth, not EXTRA crazy large teeth, but large enough. They take up, maybe, 1/10th of the real estate that is my face.

In college, I used to hear that I looked like Jenny McCarthy ... I think it was my big teeth. Because she is known for those big teeth; it is common knowledge that showing them off made her famous. To be clear: I used to only hear that flattering(?) comparison from drunken guys in bars. I look nothing like Jenny McCarthy, except that we share similarly oversized mouths. In any event, I bet she does not have to argue with her dentist to get a little whitening action on those generous choppers.

My dad/dentist claims that bleaching ruins the enamel. My response is to tell him that I may consider a back-alley bleach job and might just pick up a $29.99 kit at the drugstore. He says he'll know, in some sort of omnipresent way that infers that if I do, not only will my teeth be irreparably scarred, but I will get caught and then grounded until my fortieth birthday.

Therefore, I am hoping my new shirt offsets my large and sort-of whitish teeth. It will probably be dark, right?

My Brother:

Where art thou. I have not been able to reach you via cell, girlfriend, or email. I am beginning to worry a shark ate you. Call me, you. I need to see if you want to go in on a Kennedy book.

NO EASY ANSWERS

I am in a rough place right now. I am tired, and sad, and a little bitter. I am trying to go through the motions, and hope it will be alright, but am having a tough time putting on a cheery face. I am, as a result, also having a hard time ignoring the YELLING CAPS LOCK FUNCTION ON MY COMPUTER, either on my blog or my personal emails. I am eating brownies in numbers not recommended by either the American Medical Association or the National Diabetes Board.

The reason for the angst, the CRAZY CAPS TYPING and the chocolate binges: As of two weeks ago, I no longer have a simple neoplasm, mass, or lesion. I "officially" have a non-simple diagnosis: Brain Tumor (inoperable). My job, my life: it is all about semantics.

I am on a watch-and-wait treatment plan for a ... Jesus Christ ... brain tumor. Did I mention the inoperable part? How do doctors even consider something a "treatment plan" if there is no actual treating being done? Nationally Ranked Tumor Board #1 votes scans every three months. Nationally Ranked Neurosurgeon #2 votes scans every year. The only solid consensus is that surgery, given the tumor location, is not viable. As explained to me, over and over, cutting through all that "good brain" will likely kill or disable me. Both options would impair my ability to enjoy either fudgey baked goods OR THE CAPS LOCK FUNCTION.

My June 2008 MRI showed a mass that measured twice as large as it did in November 2007, though there is some debate as to whether that is a significant measurement. November scans were done at UMD. The most recent, at Hopkins. Not even the MRI machines can agree.

None of the neuro-people even know what kind of tumor it is because tumor type cannot be definitively diagnosed without a surgical biopsy. But - they have all guessed (in an educated fashion, I would hope) - AND NONE OF THEM HAVE SAID THE SAME THING. One of my first opinions had me dead at six months, another in the same time period was going to send me home to forget about it and watch "Friends" reruns -- something about laughter and medicine. My cell phone has SIX neurosurgeons' phone numbers programmed into it. I would wager that the general, non-tumored public does not even KNOW a single neurosurgeon.

I guess I should get on with my life, my job, my kid, my fattening desserts and MY RECENT ENJOYMENT OF THE CAPS LOCK KEY, but ... I almost drove into my son's school (more on that later), sometimes I cannot see - only for a second, like a long blink (more on that later), I am forgetting common words, like broccoli (more on that later), I am having large muscle spasms (more on that later). And the fatigue ... the fatigue ... like a bad case of the flu with a side of the flu, at times, I feel like I am seven thousand years old (no more on that later). None of this seems to excite any of the neurosurgical people, probably because I am much much better off than 99.9% of people with brain tumors. But for how long? HOW LONG!? There is no concrete answer. Months, years, decades?

I posted the essay below because it explains the nebulous, frustrating and inexplicable medical reality better than I can right now, and people, who care, keep asking (thank you, to those who ask - and care - I appreciate it).

Bravo to the eloquent author, Neal P. Levitan, Esq. Please take it away, sir:

Copyrighted material: National Brain Tumor Society (2008)
Survivor Stories - Searching for Consensus
By Neal P. Levitan, Esq.

The dictionary defines consensus as a "collective opinion" and "general opinion or accord." My very first encounter with an irresolute opinion was that of a neurologist reading a CT scan in 1982, who diagnosed me as having either a stroke, dementia, or a brain tumor. The diagnosis was further refined after a week-long stay and many additional tests at the Massachusetts General Hospital when I was told I had a tumor in my left temporal lobe that appeared to be very close to the speech center and right motor strip; it was probably a slow growing astrocytoma or mixed glioma, and was probably infiltrating the "good" brain cells with its characteristic octopus-like tentacles; thus the risk of a bad surgical result outweighed potential benefits. The conclusion: I had an inoperable brain tumor. A wait and observe approach was recommended. Although I had tremendous faith and respect for my doctors, I felt I had to take my own initiative to investigate my disease and to manage my own health.

Thus began an extensive search for answers. With the help of a loving family and supportive friends, I garnered the strength to seek additional opinions, and to hopefully find the latest and best treatment modality. I quickly realized that such a search was very idealistic: there was no collective opinion or single new treatment. Rather, I encountered vast disagreement about my disease and the proper course of action to defeat it. This was, at first, very unnerving!

The myriad of treatment options suggested ranged from immediately starting radiation therapy to having a biopsy to determine the exact pathology. One doctor said that "the tumor was there to grow," and recommended immediate partial resection rather than waiting until it became more infiltrative and perhaps more aggressive. Another warned that a partial resection in and of itself may make the remaining tumor more aggressive. Still others recommended new (and in the mid 1980's, experimental) forms of radiosurgery, and one doctor said that regardless of what action I took, I would not be alive in five years.

I also struggled through numerous medical periodicals and research studies, many of which had varied results and conclusions. This further confounded my attempt to ascertain the primary treatment available for my disease.

With all of my research and through all of my meetings and conversations with some of the most renowned neurologists and neurosurgeons in the country, I could not find consensus. What was imparted to me during this process was a wealth of information. With each new consult I learned more about the disease and became better equipped to ask more informed questions. Becoming well acquainted with the different schools of thought on my tumor type, I came to view each new resource and the multitude of information collected as part of a learning curve that would assist me in making the most important decision of my life. While I could easily have been frustrated by the lack of consensus, there was some benefit from all of the disagreement in that I learned about the risks and potential benefits of each treatment option. In the end it was this process that enabled me to evaluate the treatment choice with which I would be most comfortable.

Regrettably, not everyone diagnosed with a brain tumor has the opportunity of time; some are faced with life-and-death decisions which may be ultimately made for them and not by them. For many patients, however, there is some opportunity to learn more about the disease and varied treatment options. The fact that different protocols are available may be regarded as a positive factor; considering that apart from statistics that tend to eclipse the individuality of a person and his illness, there really is no way to guarantee how a particular treatment will affect an individual or his disease.

The challenge of coping with the absence of consensus certainly can be daunting. At first it can seem to pre-empt all hope for recovery. It may be possible to mitigate this negative spiral by focusing on the management of your situation, hopefully with the assistance of others that you are comfortable with. First, it is critically important to maintain a positive attitude and never dismiss the power of hope. Next, it is necessary to secure as much information as possible from reliable sources, including unbiased caregivers as well as patients and families who have knowledge and experience with the same tumor classification. It is similarly important to logically discuss and analyze all of the information obtained with family and trusted friends.

The final step, and in my opinion the most crucial, should be accomplished with a delicate balance of determination and respect. Challenge your physicians to respond to the opinions of their colleagues as well as to your own concerns, so that all of the issues are clear to you or someone you can rely on. Only then will you be armed with the resources necessary to make a decision in the absence of consensus.

Today, I am a thirteen year post-treatment survivor. Fortunately, for those going through a similar experience to mine, the combination of specialized organizations such as the Brain Tumor Society and the internet revolution make it much easier to access information about treatment options, to locate other patients with similar diseases, and to receive support and guidance, than ever before. Such organizations exist to provide help and purvey hope. Hope is an invaluable asset to us all in coping with illness, as well as with the frustration of not being able to identify a single best treatment option. And, hope becomes even more vital when affirmation as to the most appropriate measures for managing your disease does not exist.

Results Are In

No brain surgery. For now. Back to regularly scheduled programming...

Sick

Just heard back from neurosurgeon at University of Pittsburgh. He thinks maybe "meningioma" and "maybe biopsy or surgery." More later.

Where All The Magic Happens

How I spent my weekend. Extra credit if you can figure out what is not supposed to be there.

Subependynoma Versus Hamartoma?

Say that ten times fast while standing on one foot. My (lovely and caring) friends and family want to know exactly WHAT IS GOING ON with this brain stuff and what it means to me. At the risk of being a complete downer at cocktail parties and cookouts, I have eluded the topic in most social circles (how very WASPy of me). Also, I can't say most of the words. I just made my follow-up neurosurgery appointment since all this started and am now thinking about it again, so here is where things stand, today, right now:

Here is what the neurosurgeon's report (Jan 2008) says:

She has a small sub-centimeter sized lesion just at the septum pellucidum on the medial aspect of the frontal horn on the left lateral ventricle. I think she has hamartoma or a subependynoma in the front horn of the left lateral ventricle. [That explains it all. Right?]

Hamartoma (Wikipedia)

A hamartoma is a focal malformation that resembles a neoplasm in the tissue of its origin. This is not a malignant tumor, and it grows at the same rate as the surrounding tissues. It is composed of tissue elements normally found at that site, but which are growing in a disorganized mass. They occur in many different parts of the body and are most often asymptomatic and undetected unless seen on an image taken for another reason. Hamartomas result from an abnormal formation of normal tissue, although the underlying reasons for the abnormality are not fully understood. They grow along with, and at the same rate as, the organ from whose tissue they are made, and, unlike cancerous tumors, only rarely invade or compress surrounding structures significantly. Hamartomas, while generally benign, can cause problems due to their location. They may obstruct practically any organ in the body, such as the eye, the colon, etc. They are particularly likely to cause major health issues when located in the hypothalamus, spleen or kidneys. [So, short answer: Brain hamartoma is not a problem unless it gets bigger. Then it is a problem. Surgery for me, because of location of "lesion", is a big big problem.]

Ependymoma (Copyright, National Brain Tumor Foundation)

Ependymal tumors begin in the ependyma, cells that line the passageways in the brain where cerebral spinal fluid (CSF) is produced and stored. Ependymomas are classified as either supratentorial (in the cerebral hemispheres) or infratentorial (in the back of the brain). Variations of this tumor type include subependymoma, subependymal giant-cell astrocytoma, and malignant ependymoma.

Characteristics • Usually localized to one area of the brain• Develops from cells that line the hollow cavities at the bottom of the brain and the canal containing the spinal cord • Can be slow growing or fast growing • May be located in the ventricles• May block the ventricles, causing hydrocephalus (water on the brain)• Sometimes extends to the spinal cord • Occurrence peaks at age five and again at age 34• Accounts for two percent of all brain tumors. [Accounts for 2% of all brain tumors? What are the odds? I am no statistician, but I think, logically, the odds would be greater of being attacked by a shark while a meteor fell on your head as you were stuck by lightening and simultaneously shot by a terrorist .]

Symptoms • Severe headaches• Nausea and vomiting• Difficulty walking• Fatigue and sleepiness• Problems with coordination• Neck pain or stiffness• Visual problems [Dear Husband: Symptoms may also include compulsive shoe shopping at Neiman Marcus. There is no treatment for such symptoms. Palliative care is helpful, however, and after a long day of retail, resuscitative measures such as pedicures and dirty martinis should be considered.]

Treatment

The doctor will perform tests to determine if it has spread to the spinal cord. Surgery followed by radiation therapy is the usual course of treatment. A shunt may be needed to treat hydrocephalus caused by blockage of the ventricles. [Such options not offered at my favorite spa.]

Prognosis

The over-all five year survival rate is approximately 50%. Supratentorial epenedynomas, however, are generally more aggressive and have a poorer prognosis.

Studies of prognostic characteristics in ependymomas are limited by the rarity of this tumor. Most studies are reports of single-institution experiences with few patients. The Mayo Clinic (Rochester, MN) experience with 80 patients represents one of the largest single-institution reviews and was published by Schild et al. [3]. Seventy of the patients had low-grade tumors and 10 had high-grade tumors. Prognostic factors favorably associated with survival included tumor grade, location, and histologic subtype (myxopapillary vs other ependymomas). Survival did appear to be somewhat improved in patients who had more of an extensive resection, but this was not found to be significant on univariate or multivariate analysis. All of the patients in this review did receive radiation postoperatively, and the 5-year and 10-year actuarial survival rates in low-grade tumors was 87% and 79%, respectively. High-grade tumors did not fare as well with a 5-year survival rate of only 27%, with a high rate of local (80% recurrence at 5 years) and leptomeningeal (41% at 5 years) relapse. Guyotat et al. [4] reported their experience with 34 adult patients. They found that anaplasia and location dictated outcome. None of the 17 patients with anaplastic ependymoma survived 5 years, whereas 90% of patients with fourth ventricle tumors (most grade 2) were alive at 10 years, and lateral ventricle tumors had a 10-year survival rate of 60%, whereas patients with third ventricle tumors had a 35% 10-year survival rate. [F--K.]

©2008 National Brain Tumor Foundation / Call Us for Support 1.800.934.CURE

Enough medical jargon: So, I am fine? Or not?

Right now today I am fine. Hopefully, I will be fine after my next appointment. That is what I know right now. Case closed. Off to buy boobs now, but that is a post for another time ...

Mass in Brain - Revisited

If you read these posts because I am funny, the following is not one little bit funny. I am not even going to attempt to be funny because I am feeling unfunny at the moment and will not apologize for it (dammit!).

I saw a second neurosurgeon last Friday at the UMD Gamma Knife Center for a second opinion on brain mass (we cancelled Harvard and UPitt after Hopkins consult). So this UMD surgeon thinks the mass in my brain may be a "very slow-growing" tumor. In his opinion, there is absolutely no way to tell what type of tissue the mass is without a highly invasive biopsy, but he cannot recommend a biopsy at this point, or any type of surgery, because of the deeply entrenched location of the mass inside the ventricle. Basically the mass cannot be accessed for biopsy because a needle cannot get to the center of brain.

In fact, my particular mass is quasi-inoperable. There have been about 100 surgeries TOTAL (not only at University of MD, but at all medical centers in the U.S.) to remove masses from this specific location; many with "high mortality and morbidity." This thing is in the dead (pun not intended) center of my brain, next to all sorts of very important brain stuff and to hack away at it, a surgeon would have to root through the entire "good" brain to access "bad" blob, which intuitively, does not require a medical license to recognize that it would cause a lot of messed-up stuff along the way. In his words, surgery to get to this mass would pose an "extremely high risk of death and severe disability." Wonderful.

Usually when there is a brain mass, treatment is to remove it immediately and "type it" for pathology, but not in this case. Right now, the recommendation is "watchful waiting [code for scans and prayers]." Oh - and a lumber puncture - which I am SUPER excited about, because I love needles. Given that I am a such a patient and low-stress sort of person, this is perfect news - just sit around, calmly, not worrying about it, hoping I do not go blind or develop seizures.

Course of action: UMD surgeon recommended MRIs (with contrast and IVs - more needles!) every few months for the rest of my life (!) to see how the mass changes ... may stay the same, but may not. If it stays the same, it will be fine. If it changes, then I am screwed. As previously stated, there is very little "wiggle" room inside the brain's ventricles for foreign objects to grow. Plainly speaking, even a "benign, congential" mass can be considered "malignant" in the ventricles because of the high degree of damage even a tiny mass can cause. There is no way to know at this point as there is not much precedent on how such masses behave. The location of this mass is "exceedingly rare" and occurs in @ one in two MILLION people.

I was informed: "to add to [my] neuroses - [the surgeon has] patients who have had masses that did not change for twenty years and then all of a sudden started to grow and needed to come out - brain tissue can be weird and unpredictable." He concluded, "I wish I could tell you not to worry about this and go get a life - but I can't - see you in a few months."

I have been trying to process. It may be fine, it may not be. Lots of scary questions, not many answers. Stupid, stupid brain.

Back To The Drawing Board...

I saw a new GP yesterday, which might prove to be a mistake. My old GP was fine, I suppose. My only complaint about him is that he is young; he graduated med school the same year that I graduated law school. And while I am perfectly competent to handle a divorce or adoption or breach of contract dispute; I can even show up in court in a dark, serious suit and say most of the right things in mostly the right order, if you showed up in my office with capital murder charges, I'd refer you out. Same concept applies in medicine, in my mind. The young GP has handled my sprained ankles and mild anemia just fine, but given that my recent medical history has been - shall we say, a bit checkered? - I decided to find someone, going forward, who has kicked a few more medical tires.

The reason for my appointment is that I needed to get my permission slip signed. I dragged a friend of mine (one of the other preschool moms) to a fundraising meeting with me and somehow ended up signing up for a half-marathon to raise money for cancer. As a precaution, all participants have to have their docs sign off on a form that says, in pertinent part, "If [Patient X's] heart explodes during the training or the race, I will not sue you."

First of all, my new doctor's name - without divulging new doctor's privacy, I'll just say he has a designer last name. Let's call him Dr. Dolce & Gabbana. My husband saw his business card sitting on the coffee table (where all important filing goes in our house) and burst out laughing, "The name of your new doctor is DOLCE & GABBANA!?"

This is amusing to him because I am a card-carrying snob. I like my shoes from Italy, my water from Fiji, and my men from Sweden. (Alright, the water part is a stretch, I really don't have a preference about water. Though I did recently buy a case of water from said tropical island simply because of the lovely photos on the label and gosh darn if it does not make me happy to look at while hydrating.) The part about Italy and Sweden, however, is true.

I show up for my appointment and the first sign that this is not going to go well is the scrimmage with the nurse. She calls me back and hands me the sample cup (know in Florida as "dat der cup you take a TANKLE in!"). I politely decline and tell her, "No thank you." And then she says, firmly, "Just try." This goes back and forth for a few more seconds before she gives up and writes something mysterious in my chart, likely something along the lines of "Patient refuses to pee. Use extra sharp needles as punishment for non-compliance."

Then there is the blood. (Let me digress for a moment: Why are only the MIDDLE of those medical tables covered with the paper? Why do the sides not also deserve their own covering? It seems to me that it is only logical that most of the patient ick would spill over onto the sides of the table, and not stay neatly ensconced in the middle? Just a thought.) So I settle myself squarely on the middle of the paper, trying my best not to lop over on to the sides, where all the germs lie in wait, beside themselves with excitement at the chance to infect me with my 200th cold of the winter, when I see out of the corner of my eye - to my horror - that Nurse Tinkle is removing scary rubber tubing and vials out of the cabinet! Using my superlative powers of deduction, I say, "You draw BLOOD in the room, RIGHT NOW, before I even see Doctor Dolce & Gabbana? What if he does not want any blood samples?"

"Oh, he'll want blood. Arm please."

I protested that I have been known to pass out and really really needed to lie down and really, couldn't I just see the doctor first before we made this rash decision? She was unmoved by my plight. When I reported that, "It hurt!" she informed me, not overly warmly, "Well, there is a needle in your arm."

As I am recovering from this battery, Doctor Dolce & Gabbana enters the room. His shoes did not match his bag, in case you were wondering. I hand him my three-inch stack of medical records and then tell him I am just here so I can get my form signed so I can enter a half-marathon. He looks me up and down: "Are you a runner?"

"Nope, it is for fundraising - not really much of a runner."

Flipping through my chart: "A half-marathon is a long way ..." And then more than a tad derisively, "Oh, I see, an attorney. One of those overachievers .... " I bite my tongue and do not point out that all the doctors I know are WAY more overachiever-ish than the lawyers. But, I keep quiet, because after the extra-sharp needles, I do not want to know what else he has up his sleeve for the difficult patients.

We go through the basics. Let me tell you, if you want to get your new doctor's attention and fast, tell him or her that you have a brain mass. But that it is really nothing. And no, you have not had a biopsy to "label it" because it is really nothing. Oh, and you haven't gotten around to seeking a second opinion yet because your husband travels a lot for work and you have not wanted to go alone and it IS REALLY NOTHING!

I left the appointment in tears. Not only did he NOT sign my form (apparently, I also have an "odd" heart murmur which needs a scan and my heart may, in fact, be in danger of exploding during distance running. Since I can only deal with one major organ falling apart at one time, heart takes a back seat for the time being. I bet Jeff is PISSED right now that he did not sign up for the extended warranty wife plan when we got married - at this rate, there is a good chance our new dishwasher will outlast me), BUT Dr. Dolce insisted that I see a second neurosurgeon immediately, if not sooner. In fact, Dr. Dolce was about to call from his office to set up the appointment for me to ensure that I did it RIGHT NOW.

He explained that because the mass is in my ventricle, even if it is benign and non-cancerous, even if it is not growing, even if it is congenital and has always been there, there was a good chance that at some point, it would impede my flow of cerebral spinal fluid and cause blindness and brain hemorrhage. So, it would need to come out before that happened.

He also told me that I was very pale and correctly assumed that I did not spend much time outside (Duh? It is February!?), so I was probably lacking in Vitamin D. I was warned that if I did not take a supplement now, "my bones would rot ... someday." Now I am not a medical professional, but since my brain is in danger of bleeding, my heart may be failing and I am in desperate need of either a Caribbean vacation or a serious slather with some self-tanner, rotting bones in the far-off future seems like kind of a minor thing to nitpick about.

After my appointment with Dr. Dolce, I did what any reasonable person would do and went to Trader Joe's to pick up some lobster bisque and multiple artichoke products - pesto (no nuts, of course), tapenade, dip, and marinated hearts. My love of the artichoke knows no bounds.

In case anyone is still reading, my appointment with Hotshot Neurosurgeon # 2 is this Friday. Will keep you posted.

Neurosurgeon Appointment

My head is so full right now; I don't even know where to start. And, yes, it is 3 in the morning. I am too keyed up to sleep right now - in an awesome way.

Because I told many people that I would post the outcome of my appointment with the neurosurgeon today, I will cut right to the chase: the neurosurgeon (head of Hopkins - so he is probably not a very smart guy) does NOT think I have a brain tumor. I do have a mass in my brain, but his opinion is that it is simply a congenital deformity. Basically, I have an "abnormal" mass of extra tissue in my left ventricle, which reads like a tumor on MRI but is not tumor tissue, just "extra" brain. I think the clinical implication is that my brain has the equivalent of a third nipple. The mass is certainly strange and rare, but is not life-threatening or dangerous, if it never changes. I will be followed with periodic scans going forward just to make sure it is not growing or changing over the course of the next five-seven years, but the neurosurgeon is pretty confident it will remain static.

I feel like I just received a stay of execution. Two and a half weeks ago, my doctor called and said "You have a brain tumor." Not - I THINK or MAYBE or MORE TESTS TO CONFIRM, but "you HAVE." I had to repeat those exact words three times because it was such a surreal moment:

"You are diagnosing me with a brain tumor?"

"Yes."

"OK, to clarify - your diagnosis is ..... brain tumor? Really? Brain tumor!?"

The second I hung up the phone, I started researching immediately. I am a manic researcher - whether I am buying a vacuum cleaner or possibly getting my brain cut into - I want to know EVERYTHING about the pros, cons, insider tips, etc. While some of the medical journals were certainly over my head, the gist of what I could extrapolate was that almost any sort of brain tumor is bad and you die. Some types of tumor hasten death more quickly than others. My heart nearly stopped when I read that the average five-year survival rate was @ 30% for ALL brain tumors - regardless of whether the tumor is benign, malignant, treated, or untreated. Not great odds.

I had just gotten my head wrapped around this idea when we met with my doctor the day before Thanksgiving. She informed me that she and her colleagues had reviewed my films and had narrowed down the classification of tumor to three possible types: mengianoma (ok - can be dealt with - would be best kind to have out of the three, but they did not really think it was this one b/c of location), neurocytoma (also - not super-awful - exceedingly rare, so may be unlikely), and .... drumroll, please ... astrocytoma. I now know that "astrocytoma" is one the scariest words in the English language.

This sort of information kept me up at nights:

(Medscape) Astrocytoma: Malignant astrocytoma represents one of the most devastating tumors affecting children and adults. Surgery and adjuvant conventional radio- and chemotherapy have had minimal effect on changing the poor prognosis, which remains at a median range of only 9 to 12 months.

I was told that the neurosurgeon would review my new scans and make the call on what type of tumor I had, and what to do about it. First line treatment is most often surgery - to biopsy, get a tissue sample and remove as much as possible. For obvious reasons, brain surgery is not without risks. To add to the stakes, the Hopkins neurologist told me that there were only about 20 people in the country that are "acceptable" at removing intraventricular tumors because it is such a difficult area of the brain to access surgically.

As I began mentally preparing myself for my appointment, I played through the scenarios in my head: Worst case: Inoperable, astrocytoma, prognosis of months? Better case: Can remove through surgery, is benign, surgery not as risky as had been told, may have a few years ... maybe more? Best case: Think all can be removed, will have full recovery! Either way - I was bracing myself for the "surgery on your brain" news and all the inherent risks.

I did not tell Jeff or my family this at the time because it seemed over-the-top morbid, but I recently spent the better part of a day checking into options for hospice coverage. I got a packet of info from one of the brain tumor non-profits and was going through the checklist of things to do while dealing with a brain tumor diagnosis. Step Ten: Line up hospice care, now, before surgery, while you are healthy and have the strength. Wow. There are no words to express how chilling it is to call to inquire about your own hospice care when you are 32 years old.

So - the diagnosis of "line up hospice care" to "you have a brain nubbin" is a a pretty big discrepancy. When we had my appointment yesterday, we had already sent my scans and records to Mass General/Harvard and Pittsburgh (kind of random - but one of best intraventricular surgical guys is there) for second and third opinions. I am assuming all will we well with that. I debated calling those off but 1) it is my brain and 2) well, it is my brain. Want to be 110% sure ... maybe 120%.

I still have weird symptoms, which the neurosurgeon thinks may be a pseudotumor. Not super scary like the word would implicate - simply means elevated pressure in the CNS. Not a huge deal. He wanted me to have the lumbar puncture done to look for that and some infectious agents - will schedule that for post-Christmas/New Years. I think I have vastly exceeded my quota of medical drama for 2007 already.

So, my original post was correct - I have an imperfect brain. However, it is not an imperfect, lethal brain, and for that I am very, very happy.

At the risk of this sounding like an Oscar speech: Thank you, a thousand times over, to all my friends and family who read my notes, sent me wonderful mail and presents, called me over and over (even when I was not returning phone calls), and prayed for me or kept me in your thoughts. I can honestly say that I would not have dealt with this terrifying time so well had I not had your support and love.

Love, J

PS I ROCKED those lucky pants at my appointment .... in case you were wondering.

56 minutes ...

I cannot sit still - I just decided to run to the drycleaners to pick up my "lucky Court pants" to wear. That should help, right? Lucky pants - I am sure I read something about that recently in the latest issue of The New England Journal of Medicine.

Waiting

I have one hour before I head to the neurosurgeons to see about "options" and I am literally sitting here shaking. I have never been more nervous in my entire life - not in the days before the bar exam when I was convinced there was NO way I could pass (which I did, for the record) or during the 9th month of pregnancy when Ethan seemed to gain, like, three pounds a day, and I started to REALLY wonder if he was ever going to be able to get out of there (which he did, for the record). Right now it is 1,000,000 times worse.

57 minutes now......tick tock.

Like the Sublime Song - Drip Drip Drip ...

I have a cold. The kind where your head plumps up and everything just drips from all orifices, like some sort of medieval Chinese water torture. In a karmic sense, should I not be exempt from colds - just for this week, at least? I had a big list of (fun) things to do today and now I am just lumping around the house blowing my nose until my appointment.

I have to go to UMD hospital this evening for my extra special high tech MRI to get "thin slice images of my neoplasm" (per my neurologist). There will be an IV - which I hate. IVs totally freak me out.

I am a terrible patient; I hate the needles, the blood, the hospital smell, the needles, the food, and the needles. There is a type of "awake craniotomy" that I just read about, where one is , in fact, awake (hence the name) while they drill into your brain. And I thought going to the dentist was bad!? If I need that, I will throw myself in front of a bus. It takes a sedative for me to schedule a tooth cleaning.

My neurosurgeon appointment at Hopkins is on Tuesday, which will be the moment of truth. Or terror. The tumor/blob is smack in the middle of my brain, which poses problems for obvious logistic reasons. It is hard to get to the middle of the brain without screwing up a lot in between. I was reading the medical journal articles last night about the surgery for the type of tumor they THINK I have and one of the studies from a few years back had a mortality (read: death) rate of 75%. The vast majority of the people that did not kick it had to endure slight "complications" ---- like blindness, paralysis and inability to speak.

Perfect.

A more recent med article listed the surgical "success" rate at around 69% - which the author concluded was an "acceptable outcome for neurological surgery." Acceptable for whom!? I can assure you that the other 31 (dead) percent were not happy about it.

So - I am trying to hold it together and occupy my mind until Tuesday. I should be out, like, planning a trip to Tuscany or swimming with dolphins (Holla! Deltas!) or starting a foundation or at least, shopping for super expensive shoes that hurt my feet. Instead I am home, blowing my nose and eating cold pizza while I type and listen to Christmas music.

Blah - I may go take some NyQuil and try to nap until MRI/IV torture time.

BAM!

Brain tumor.

Ok, two neurologists are saying I have one.

Now what the hell do I do?

I Have An Imperfect Brain

The MRI report says:

"Rounded T2 hyperintense structure in the region of the frontal horn of the left lateral ventricle."

Had I known my world was about to implode I would have worn cuter shoes, or at least some lipgloss, to pick up the radiologist report.

Dammit.