What's The Rush?

No test results back yet. Still waiting ... and waiting ... and then waiting a little more.

WARNING: May Cause Seizures

You may have noticed I am playing around with the layout of my blog! And by that, I mean that unless you are legally blind, you are now flinching at the forty different fonts, jarringly unmatched colors, and multiple personality settings on this page. I needed some mindless fiddling while waiting for phone to ring from doctor ... and started with trying to change the color of the font and ended up ... um, here. It now hurts my head to look at.

I should have known better than to attempt to undertake any type of blog upgrade project since my tech skills are limited to dropping my phone in the toilet and then showing up at the Verizon store with a wet phone to report, "This is BROKEN!" And then buying a better phone, because who wants a phone with a product defect (as in, phone fails to work when submerged in water)? I don't!

I'll work on this (not the phone toilet dropping; I've just accepted I have clumsy hands and now purchase extended warranties) ... but the blog ... and will try to get back to readable form soon. And I apologize if reading in current format induces migraines. I owe you a martini for your troubles.

Sure, I Can Wait

Dr. NeuroSquared's reply to my email this morning:

The paraneoplastic panel is still pending. It will take a few weeks at least. We send it to Mayo. Call or email me in a few weeks if you have heard nothing. The MRA of the neck was normal. No evidence of subclavian abnormality. I will mail you the report.

MRA was done yesterday (Sunday morning - IV and hospital at 7 am - and how was YOUR weekend?) to look for vascular abnormalities in the brain, which would have been an explanation for the cognitive problems. Cerebral-vascular problems would restrict blood flow, thereby impairing vision and function. I was actually hoping something would show up on that, since vascular problems can be fixed with medicine or surgery.

The paraneoplastic panel is the "you are toast" test ... (and UNFIXABLE) ... so NO rush on those~! Take your time, Mayo! It is not like I am waiting to know!

And husband, I suggest that you do not look at the AmEx bill for the next few weeks and just consider the on-line shopping a medical expense. I am positive that new shoes are a valid tax deduction. Alternative medicine? Medical devices? Supportive therapy?

Any accountant friends gonna back me up here?

Is There A Fundraising Walk For That?

My world is heavy these days and appears to be getting no lighter in the near future. This past week I was evaluated by a rheumutalogist *(that is probably spelled wrong but my spellcheck will not provide me with another spelling, so be it...), an ophthalmologist, an endocrinologist, one neurosurgeon, had a phone consult with a neurologist who specializes in seizures, had an emergency brain MRI, more labs that NIH probably handles in a busy month and capped off the week on Friday with the neurocognitive neurologist appointment. Herein out for the sake of typing efficiency, the double-neuro will be Dr. NeuroSquared. By the way, what is with my Friday afternoons these days? A far cry from pretending to stress about exams while enjoying dime beers at the Balcony. (I refuse to call it Top of the Stairs. End of Discussion.)

I have only about ten ounces of blood left in my body after the vampire nurses have had their way, and for someone who never adopted a street drug habit, am sporting some mighty impressive track marks. Anemia nonwithstanding, I managed to purchase an Easter basket for Ethan. And by Easter basket, I mean, of course, an Easter wicker hamper ... this thing is stuffed with enough toys and candy to keep a brood the size of the Jolie-Pitts busy for most of spring. Overcompensate with material things to make up for Sick Mommy Guilt Syndrome? Me? Never!

First, let me say, I have wonderful wonderful friends. Thank you so much for all the phone calls and emails and flowers (love the flowers!). Again, I am so sorry I am not getting back to anyone these days ... what with the bloodletting, the appointments, and all the sleeping in the between appointments and bloodletting ... well, there you go ... that has been the past couple weeks. I have not been getting back to anyone - not just you - I promise. Even though I have been a terrible correspondent in recent weeks, I so very much appreciate all of your kind words and thoughts and prayers. Please keep 'em coming.

I have a theory that there are three kinds of sick. There is Annoying Sick, this is the kind of illness otherwise healthy people get, the kind where you complain to friends on Facebook about how you have to take Sudafed and watch Oprah all day. There is Lifetime Movie Channel Sick, this is some sort of life-altering, even life-threatening, diagnosis that warrants enough drama to be interesting and heart-wrenching enough for a two-hour movie (maybe watched while one is Annoying Sick). LMCS requires the patient "fighting" and being "courageous" and having family and friends rally around them through treatment. There is usually some sort of walk for this type of thing. And then there is Scary Sick. Scary Sick is where you are actually jealous of LMCS people, which is, in a word, sick. I am sad to report I may be Scary Sick.

The good news is that the tumor appears stable! The bad news is ... read on ...

The dreaded appointment was to review the results of my neurocognitive assessment. I was referred to Dr. NeuroSquared, after the neurosurgeon at Hopkins noted my self-reported memory and cognition problems. The neurosurgeons' recommendation was to see this "specialized" neurologist to get a baseline cognitive function exam and see if she could shed light on why I was having reported cognitive difficulty (he did not think my brain tumor was causing those issues but could not tell me what else could be). The cognitive exams included neurological assessment and detailed cognitive function testing, which included, among other things, evaluation of memory, executive function, and fine motor skills.

I walked out of the testing feeling ill, knowing my results would be awful. I could not recall ANYTHING. I was shown a figure and then asked to draw it from memory and could not. I was given a list of fifteen words and asked to repeat them back and could not. I had to put pegs in a grooved pegboard with each hand and had the fine motor skills of a one-hundred-year old (testing showed me at the 2.3% percentile for this). I did not know the time or the date or who the President before Obama was (that one might be selective memory blockage - sorry Republicans.)

While I had been lamenting to Jeff for months and months that I cannot remember anything and was getting worse, he claimed that he did not notice. I knew, though, but chalked it up to the tumor in my brain. Most logical people would. Even if they were telling me I was having no impairment effects from the tumor, it seemed obvious to me that there were memory issues, and I underplayed how bad they were, thinking the thing in my brain explained them away, that since I had not walked out of the house wearing just underwear (*yet), I was probably still OK.

It seems insane to me, in retrospect, that Jeff did not notice I was such having substantial memory impairment. He sees me every day - but he claims not to have noticed. I think in his defense, I have always been more than a little attention impaired - LOOK SOMETHING SHINY! - Wait, what was I saying??

Yes, attention: I have on more than one occasion neglected to put my car in park and it rolled into something (on the way to a graduation celebration, that "something" was a lake), I have left the house with two different shoes - one brown, one black, different heel heights - and headed to work (to the amusement of my then-secretary), I am terrible with names and if I say, "Hey YOU! It is so good to see YOU ... so good! ... YOU, there .... have you met my husband ... Jeff, this is that PERSON I was telling you about ... ?", it should be clear to you that in my mind you are Whats-Her-Face-That-Lady-With-The-Weird-Cat-That-Walks-On-A-Lease. Or whatever.

That has always been me. Spacey, yes. Dumb, no. Though, admittedly, sometimes it is hard to differentiate between the two, so I get how maybe he would not notice.

But, attention and cognitive skills involving memory and recall; the two are different animals. Despite the car-rolling footwear-ignorant name-forgetting, in the past, I have always had a virtually photographic visual memory. If I read it once or twice, it will be stored somewhere (and I read everything). School was always easy for me. Scratch that, school was always easy for me, except for law school, which is only easy for genetic freaks (Hello! to one-half of my Facebook friends and former Law Review Editors - I meant "genetic freak" in the nicest possible way!) or people disinterested enough not to care (Hello! to other half of those Facebook friends!). Point being, I always tested well, for what that was worth, and this fact was due largely to a better-than-average ability to recall.

My husband can attest that in the past, I had been blessed (?) with the ability to remember conversations verbatim and all corresponding details. This skill has proved useful in court, once or twice, but more often than not, serves no purpose in any sort of real-world context. Most marriage counselors would agree that no good will come of interrogating your husband about arguments you had a decade ago -- even if you KNOW you are right AND he still has not apologized (*just saying' J).

Poor Jeff has endured far too many conversations like this over the years:

You sir, are INCORRECT. What you actually said - seven years ago today - was that you thought Mary Sue Misckey was extremely ATTRACTIVE and you might date her if we were not dating, but we WERE dating, so you would not, but then you said if we had an open policy about dating, maybe you consider it. And then you ordered the Oysters Rockefeller and dropped your napkin on the floor by accident and then you asked Joe, our server, for another napkin, and then I said "Whatever!" and stomped off to the bathroom and the bathroom had sage-colored walls - no, no, more of a celery, really - and I looked in my Louis Vuitton (knock-off) bag and discovered I had left my Orchid Passion Madness lipgloss at home and so I returned to the table and we ordered entrees - filet for you, sea bass for me, I substituted the potato gratin for the roasted tomato - and your filet was undercooked, but tender. HOW DO YOU NOT REMEMBER THAT?!

I think if you marry a lawyer - especially a female one with tendencies toward the neurotic (all part of my charm) - you are on notice that such conversations will happen. That is my way of making a blanket apology for all such past conversations, without really apologizing. Hmm. So I M attempting humor because if I dwell too long on the real subject of this, I do not know how I will keep putting one foot in front of the other. Have you ever had an experience so bad that you do not dare let yourself start crying because you are afraid you will not be able to stop once you start? That is where I am right now. Jokes, no tears. Because the breakdown - once it comes - will be epic - and I just not ready for that. Not right now.

So, back to two Fridays ago ... I had the testing done and was told by the tech that the report would be ready for me on Monday. I was also told if this highly-specialized neurologist wanted to see me, she would call and bring me in (she only sees four patients a month). If not, then the report would be sent to my neurosurgeon and he could review the results with me.

Dr. NeuroSquared called the day after testing and I was on high alert. Red Flag Number One: She wants to see me. This meant I passed the threshold Objectively Screwed Up Enough To Be Medically Interesting cut. Red Flag Number Two: She refused to send me the report ahead of time, telling me "we had to review it in her office." Famous last words.

The testing proved mild cognitive impairment/dysfunction. What does this mean?

This is from NIH's publications website: Mild cognitive impairment. (from International Psychogeriatric Association Expert Conference on mild cognitive impairment). Mild cognitive impairment is a syndrome defined as cognitive decline greater than expected for an individual's age and education level but that does not interfere notably with activities of daily life. Prevalence in population-based epidemiological studies ranges from 3% to 19% in adults older than 65 years. Some people with mild cognitive impairment seem to remain stable or return to normal over time, but more than half progress to dementia within 5 years.

As explained to me, despite the name, "mild" cognitive impairment for my age, level of education, and former occupation (I am not practicing right now and have handed off all my cases on an emergency basis), is not considered a "mild" finding. Given those factors - as explained to me - my memory and executive function are *way* below what should be expected. My test results might be acceptable in the context of a 90-year old with a GED, but as applied to me - age and education-wise - they are considered pathological.

Upon further review of the research, I discovered that the medical literature indicates clinically-defined mild cognitive impairment "should not interfere with daily activities of independent, unassisted living", such things as the ability to "purchase things at the grocery store" or "balance a checkbook." Because I went to law school to ensure I would still be able to pick out a cantaloupe on my own and, even, select the right bill out of my wallet to pay for it. In my early thirties. WITH NOBODY ELSE'S HELP.

So what does Dr. NeuroSquared think is the cause of this dementia lite at the age of 33? What about all the other stuff? All the abnormal labs, breast issues, visual problems, thyroid, debilitating fatigue? She has reviewed all of the test results, scans, labs, and consults with other specialists and has a working differential diagnosis:

Parneoplastic neurological syndrome

An exceedingly rare, irreversible and rapidly fatal progressive neurodegenerative disease. There is no treatment or cure for the disease.

Sweet. Mother. Of. God.

An Introduction to Paraneoplastic Neurological Disorders

http://www.paraneoplastic.org/

What are paraneoplastic neurological disorders? Paraneoplastic neurological disorders (PND's) are autoimmune diseases that occur in response to the presence of cancer somewhere in the body. The cancer cells in paraneoplastic patients express proteins which are normally only made in the brain. These proteins cause the body's immune system to produce antibodies in an attempt to suppress the cancer. Unfortunately, these same antibodies can trigger an autoimmune attack on the brain and the body's neurological systems. Doctors are not yet sure why the immune system reacts the way it does in some patients with cancer, but not in others.

What types of cancers are most commonly associated with paraneoplastic disorders? Breast, ovarian and lung tumors are the most common cancers to be associated with PND's. However, cases of paraneoplastic neurological disorders have also been found in patients with other forms of cancer, including lymphomas, testicular cancer, childhood brain tumors and cancer of the larynx. In about two-thirds of patients, the neurological symptoms of PNDs begin before cancer is found.

Is cancer always found in paraneoplastic patients? No. It is entirely possible to have the neurological symptoms and antibodies associated with a PND and not have any identifiable cancer. Some doctors theorize that this is because the proteins associated with PNDs act as a natural anti-tumor weapon, thus preventing the cancer from growing large enough to be found.

Are there different types of paraneoplastic neurological disorders? Yes. There are a number of different antibodies and autoimmune reactions that are classified as PND's. The most common PND's include Paraneoplastic Cerebellar Degeneration (PCD), Opsoclonus-Myoclonus Syndrome (OMS), Eaton-Lambert Syndrome, and Paraneoplastic Limbic Encephalitis (PLE). There are others as well. Symptoms and treatment options can vary depending on the type of PND and the underlying auto bodies involved.

What are the most common initial symptoms? Difficulty with walking, balance, or speech; hand tremors; memory and mood disturbances; lack of coordination; weakness. These symptoms may begin suddenly or may be gradual.

How are PNDs diagnosed? For the most common paraneoplastic syndromes, diagnosis is usually made by a blood test which looks for common antibodies associated with the syndromes. In more difficult cases, however, PET scans, spinal taps, and other diagnostic methods may be used.

What is the life expectancy for someone who has been diagnosed with a paraneoplastic disorder? It is impossible to give an average life expectancy for paraneoplastic patients. Many variables can affect how long a patient with PND will survive including their age, the type of underlying cancer, the type of PND, the success of cancer treatments, and other pre-existing health conditions. Several small scale research studies have indicated an average life expectancy of between two and three years. Although the International Paraneoplastic Association does not keep formal records, we have noted a wide variety in the life spans of the hundreds of paraneoplastic patients who have contacted us. Some patients deteriorate very quickly and pass away within months of the beginning of neurological symptoms. Others live for 3, 4, or 5 years. We have been in touch with paraneoplastic patients who survived for 10 years or more, and have at least one report of a paraneoplastic patient who lived for 35 years after neurological symptoms began.

Do paraneoplastic patients ever fully recover? Very rarely. Of the hundreds of patients who have been in touch with the IPA, we know of only two patients who fully recovered after successful cancer treatment. However, many patients find they stabilize with proper treatment and may even show some small but gradual improvement over a period of months. Early treatment before severe neurological damage occurs is key.

Do all paraneoplastic patients end up in nursing homes? No. While many patients will need some form of assisted care, many manage to remain at home with the assistance of loved ones.

So here is what I know: 1) The doctor suspects I have it, she is testing for it, but she needs to put all the pieces together before she can diagnose it. Blood, LP, many more tests in coming weeks. 2) I am almost 100% certain that if I DO have it, it is not due to testicular cancer.

Paraneoplastic assay labs tomorrow, done at Hopkins (7 am - nothing like a blood draw before sunrise). The blood will be sent to Mayo for analysis, then an EMG where they will try to stimulate a seizure (I have been instructed to stay up all night - apparently, tired brains seize better).

Later this week, another brain scan to look at blood vessels and a lumbar puncture. These doctors have *really* have wanted to puncture that lumbar of mine for awhile now, and I think there is no getting around this one. The LP will look for "inflammation and floating cancer cells in spinal fluid." I also need to pursue the breast biopsy, the thyroid biopsy, lymph node biopsy, thymus studies - maybe dermatology too - to try to determine if there is some occult cause (meaning, hidden, not witch doctor) of underlying cancer triggering the neuroimmune response.

I plan to do all of that at Hopkins because 1) It is close to where I live and 2) To do all tests together makes it easier to triage what needs to be done first, and for all the doctors to share results as they come in. As you would imagine, a lot of specialists are involved. (A tip for anyone reading because they are having their own medical problems: A one-stop major medical center makes it easier logistically).

I am really hoping she is wrong, a differential diagnosis is not definitive, obviously. But I cannot deny the fact that doctors do not think lightly about telling a patient that a horrifying and fatal disease is "of concern" to them. I am still with it enough to recognize, beyond the mere humanity aspect of such a thing, is the fact that they risk getting sued if they are wrong. (And I really hope she is wrong.)

I debated not posting this because I do not know if this is what I have and it seems too early to panic. I need to get the blood back and the LP test results before I will know ... but the blood turnaround time for these highly sensitive tests at Mayo is 21 BUSINESS DAYS. I realized I cannot keep my mouth shut about something of this proportion for that long. And when people ask how I am doing, the answer is somewhat more complex than "fine!"

PS To those very close to me, please please please stop telling me "not to worry." I know you are only trying to reassure me, but when the doctor with a 79-page CV who *only* does this type of crazy rare complex disorder tells you this is what she *is looking for* and orders 50,000 more scary, invasive tests and super-expensive tests to try to confirm it, worry is permitted. My Worry Is Hereby Noted, on the record. Big Worry. Lots of Worry. No matter what you say. Unless you somehow want to pony up a sample of your own spinal fluid for me to offer up to the lab, then I will worry less. Until then, my Big Worry will be ongoing until I get some test results to the contrary. Then I will go back to worrying about normal stuff, which I do well. For example, if things were "normal", I would be worrying about how the root part of my hair is now almost as long as the blonde part and how my eyebrows have not been waxed in so long that they look like they are eating my forehead.

PS (Last time - cross my heart, hope to ... no WAIT, not that) Reflecting back on the appointment, I asked the doctor about my driving. Can I drive again? Here was her response: "You can drive. It is in your best interest to stay as active and maintain your normal life, as much as you possibility can ... while you are still able to do so ..." The impact of that statement did not really hit me at the time, but now .... typing it ... ? Drs. do not say that to patients they think will be OK? More worry.

Alright, according to my research, there are only about ten doctors or medical centers that "do" cases of PNS - Hopkins being one - and Dr. NeuroSquared is the expert there. I am hoping she is wrong and was having an off day when I was in. I'll do all the tests and go from there. Right now I am just trying to keep breathing AND trying to avoid looking at these crazy eyebrows and black roots in the mirror.

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.

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.

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.

The Girls - Update

LIFE HAS BEEN CRAZY. Here I go with the caps again. In real life, I tend to speak in ALL CAPS punctuated by wild gestures which have been known to send objects within a three-foot radius flying (watching myself on video can be painful). One of my best friends banned me from red wine at her wedding reception for this reason. She wisely realized that the equation of wild hands + Merlot + white silk gown = potential unpleasant outcome.

As for this latest medical blip, I think it will probably be fine. The odds of me having breast cancer at my age are pretty low. But since my body seems to enjoy flashing the Big Middle Finger to medical statistics - with this one in two million brain thing! - it is certainly not something to ignore.

I saw the nurse practitioner at Hopkins Breast Center on Monday. She was not sure. So the Breast Cancer Tumor Board (bet that is one wild bunch!) reviewed the films. I just heard back that they would like me to come in for a "second look ultrasound" next week and then plan a course of action. Right now, the jury is out on whether to biopsy or not.

The mass is very, very small (@ 5 mm) so if it is something bad ... breast cancer at an early stage is usually treatable, so that is positive. The surgeons do not seem overly worried. I have experienced a "worried" doctor before and hope never to again. Last year when I got THE brain scan reports my then-neurologist cancelled her medical school lecture and all her other patients so she could get me into her office, the day before Thanksgiving. She also gave me her home and cell numbers during the appointment - it was at that moment that I realized, "Oh my, this cannot be good ..." Before I ever knew the rest of the grim facts, I found that singular act alarming.

At this point, I am viewing this latest medical blip as more of a hassle than something to stress intensely about. Not to minimize breast cancer; it is a terrible disease. I lost an aunt to breast cancer just a few years ago. I recognize it is serious - I mean, it is cancer. But I think once you find out that something is wrong with your brain, problems with other areas of the body - even serious ones - seem manageable. It may sound odd, but I am almost relieved that there may be a medical problem that I can actually DO SOMETHING about. Biopsy? Hell ya! Cut that lump outta there! It is a much better place for a Type A individual to be mentally than the watch-and-wait tumor approach.

Speaking of As ... I told Jeff that if I do need replacements, he should be prepared for me to go full-out with the double Ds (for some reason, he did not seem displeased by this prospect). I have always wondered what it would be like to be part of the traffic-stopping cleavage club. Might as well have big loud ta-tas to go with the rest of my ALL CAPS persona.

WTF?!

Universe? Hello. It is me, Jenny. We both know that you have kicked me about a lot recently. And then while I was trying to catch my breath, you sucker punched me. And then you slashed my car tires. Apparently, your momma did not teach you how to play nicely with others.

But that is not altogether negative, because tough experiences make one a better person. More empathetic, more kind, more generous. All good stuff. So I get that. But I think I have had enough for right now. Karma-wise, I should be fine. I pay my taxes in full and on time, I let people holding only one grocery item jump in front of me in line, I like babies and kittens, I floss regularly. I know I am a strong person and all of that stuff, but I am getting a little worn out trying to prove it to you. So I would like you to officially note the following objection, for the record.

I am saying Uncle. OK?

Uncle.

UNCLE UNCLE UNCLE!

On "normal" days it is easy enough to pretend all is well with me. Try to hold it all together and balance all the spinning plates, hoping none fall. This week has not been a normal week. On Tuesday, it was Hopkins in the morning for IVs and scans, American Radiology for x-rays (re: lymph node involvement) and Centennial Medical for heart monitor fitting. The exhaustion level has been bad and getting worse, so my doctor wants to start me on Provigil to help combat the severe fatigue. Provigil is a stimulant and carries with it a small risk of heart explosion – not his exact words, but the gist. Since I have a benign murmur, it is prudent for him to check out my heart rhythm to ensure it would be safe with the stimulant meds. If these meds work, it may be bad news for Starbucks shareholders. Right now, my daily latte intake single-handedly funds Mercedes leases for at least three of the junior VPs. Throw in my morning bagels and the occasional scone and I am also paying for their childrens' private violin lessons.

Tuesday evening it was off to my therapist for some long overdue mental tweaking. Our appointments have taken a turn for the ridiculous. She used to hold me to high standards and push me. Lately I think she considers it a success if I show up and she can see that I am not actively trying to chew off my own hands. On my last visit, I caught her up on all the latest medical details. "So," I began breezily, "Here are my records … they are thinking subependynoma ... they cannot operate …"

Her pen stopped scribbling and hovered above the paper. She peered at me over her glasses with a flash of unrestrained expression before she composed herself. My therapist is a psychiatrist, an M.D., who has been practicing for thirty years. A large part of her practice deals with the truly "abnormal" along the spectrum of mental health. She professes a special fondness for her "schizophrenics – so fascinating!" When I first started seeing her and opened with, "I don't want you to think I am crazy but …" she countered with, "You don't even come close to crazy. A patient this morning thought he was John Lennon and that he could fly. It takes a lot to shock me." That fact that I could, for one brief unfiltered moment, alarmed me.

The breakthrough moment of this appointment was when she urged that I needed to "figure out [my] best life and live it."

I challenged, "You want me to live like I am dying?"

Pause … one second, two seconds …

"Yes," she replied evenly, "like you are dying."

The next day it was back to the regular docs for more heart monitoring and lab testing. I had to wear this heart thing for twenty-four hours. It attached to my chest and under the rib cage with adhesive electrodes that sprout rope-thick cords. The cords connect the electrodes to the actual monitoring device. The monitoring device itself resembles a large Walkman. This got strapped into a fanny-pack belt around my waist. Every time I peed it threatened to fall off into various public toilets. I think I would have left it there.

Between the chest electrodes and dangly cords and lumpy wire bumps and fanny pack, there was no discrete way to model this contraption. Since I was advised to go about my normal daily activities with this thing on, I went to lunch with my dad, to work and ran a few errands about town. The public reaction to my Bionic Woman look was mixed. Some gentler souls held doors for me and offered to carry my packages. They seemed unsure what exactly was so wrong that it would warrant such medieval and extreme medical intervention and took pity. The alarmists were a different matter. In our post 9-11 era, not every stranger looked at my possible Unabomber (female edition) device with kind eyes. I felt as though my moves were closely documented to ensure that I was not about to self-detonate in the Tampax aisle of Target.

Today it was back to Hopkins for evaluation by a new neurologist. I expected a strong talking to because I have not yet done the lumbar puncture. The logic behind the LP is to see if the tumor is shedding cells and infiltrating the spinal cord. If it is, then I don't even know what they would do, remove my spine? No, that cannot be right. In any event, he was fine with holding off on the LP since the MRI of my spine was clear. This makes me absurdly happy since I am breaking into a panicked sheen just typing the words "lumbar puncture." The thought of having my lumbar "punctured" makes me want to vomit, pass out and then buy a bus ticket to Mexico far, far away from organized medical care. Not necessarily in that order.

I have been told that the LP is really no different than an epidural. That, however, is factually untrue for one simple reason: An epidural is provided when one is in more pain that even the Devil himself could imagine. I knew labor would hurt but I had no IDEA how MUCH it could hurt. During labor, if the anesthesiologist had shown up with a pair of forks and told me the contractions would feel better if I would just stick the tines into my eyeballs, I not only would have complied, I would have asked him when the set of butter knives would be arriving so I could do the same with those. But to take a perfectly good spine and just PUNCTURE it … I don't know … the thought squicks me out.

But don't you worry your pretty little head that I get off scot-free in the bizarre medical test department for more than one full week. Nope. He thinks I may be experiencing seizures and wants me to have an EEG. You would think an event such as a seizure would be easy to discern -– one is either foaming and writhing about on the floor or one is not. Apparently, though, there are many flavors of seizure. My muscle twitching, word misappropriation, and the driving near-miss could all indicate seizure activity. It is also possible that I could be having sub-clinical seizures at night while sleeping and this is contributing to the endless fatigue, so I will likely do a sleep study as well.

Since we were at Hopkins anyway I decided to pick up my scan report for my breast MRI. I saw a breast specialist recently because I had a lump that was not going away. My OB checked it out and when it started to get bigger, he recommended more testing. I knew the radiologist's report would be ready, but had not heard from the Breast Center doctor yet. One guess what the report says? I can only assume that my boobs have felt left out from all the fun because they (well, one) has developed its own mass. I have a mass in my freaking breast. To match the mass in my freaking brain. Matching masses.

Now I have not TALKED to the doctor about this report yet since I picked it up at 5 today. She said, before, that scans can pick up false positives but if the scan came back abnormal, the next step would be a biopsy. So I wait. This is how all this brain nonsense started almost one year ago. Right before Thanksgiving. With a report. And a mass. A reported mass. And now I am tired. TIRED.

Hear me Universe, cut it OUT. Shakes fist at sky. Ok? Please?

This girl needs a break. And a stiff cocktail - Grey Goose, extra olives.

Why I Blog

I have been on a blogging siesta. It is summer, after all. There have been other reasons; I have been feeling awful lately – just awful. Poor Jeff is tired of hearing me complain recently that I "feel like I am dying." I have not blogged about it because who wants to read about how I feel like my head is stuffed with cotton and my body is full of lead? How, on weekends, I can sleep for fourteen hours straight and still feel like I have pulled two all-nighters in a row. How I agreed to help my friend out and babysit her one and three-year children and then, in the middle of the day, called my husband at work – sobbing – because I felt like I could not physically keep up with them and was SO MAD at that moment at my ridiculous body, my ridiculous brain, my ridiculous diagnosis.

The second reason stems from an issue more complex. When I started this blog, I did not set "rules" about what I would and would not post. I was strictly in survival mode. I had just been handed a life-altering diagnosis and I had two simple goals: 1) keep family and friends updated because I knew I was in for a roller coaster ride and 2) venting. I had a lot to vent about. I still do. I did not think through the potential implications of posting about family or friends or intimate details or sex or whatever. I just did not. Going forward I feel like I have an obligation to pause and reflect on what I say.

A recent post caused great upheaval in a relationship that was already, at best, fractured. I will not get into messy details (though I would LOVE to) out of respect for certain persons involved. Those in my "real life" know what has transpired and why because we have discussed BlogGate 2008 and the fallout ad nauseam. While I do wish that certain relationships were and could be different, they are not. So I have thrown up my hands and cut my losses. I do not need (extra) negativity in my life at this time (ever?). It is difficult to accept that there are some people who will never treat you the way you wish they would. On the flipside, there are those that will treat you 200% better than you ever expect them to. With my new "life is short" mantra, I prefer to focus on those relationships.

As a result of this tsunami, I debated removing my past blogs. I debated password protecting my posts. I debated stopping blogging altogether. After some serious internal wrestling, I have decided to do none of those things. Here is why:

Blogging is great therapy. I like to write. I enjoy the creative process of sitting down with my computer and committing my thoughts to print. Legal writing is not the same as personal disclosure and analysis.

The sense of community is amazing. It is wonderful to hear from people I have not spoken with in years – people that are thinking about me, praying for me, cheering for me. Thank you, all – your messages make it easier to get through the tough days.

My son. I may need some Kleenex by the time I am done this part. Assuming worst case scenario, I worry about my son. My husband; he'll be ok. He has had ten plus years - and counting - to enjoy (?) me and all my neuroses and personality and company. He'll be just fine ... but my son. My son?

I worry about death. It just seems so – I don't know – final. To be more precise, it is not death per se that I worry about. I worry about the process of death. All the inevitable losses - the loss of independence, the loss of communication, the loss of self. I worry that my son's last thoughts of me might be in this state of decline. I worry that he may never know me as a real person. I worry about my legacy. I want him to know about me. I want a record of my thoughts, my jokes, how much I loved him. Are you crying yet? I am.

So I will BLOG! I will BLOG for me! For the First Amendment! For women with brain tumors and overpriced shoe shopping addictions, EVERYWHERE! I will persevere.

Parting thought: If you do not like it, then stop reading it.

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.

Let's Use The Good China

I am surveying the contents of our kitchen trying to find something to eat for dinner. Note that I specifically and deliberately did not use the word "cook" because I am not a very good one. Eating, however, is something I truly excel at.

My mom is a fabulous cook and at some point, tried to teach me. Her lessons did not really "take." I set off the smoke detectors recently reheating pizza in the oven. Come to think of it, just the other night, I set them off again when I started a (small) fire on the dining room table while sending out Christmas cards and burning candles (to be clear, I mailed the cards, not the burning candles).

Which reminds me - true story - several years ago, our then twelve-week old kitten caught itself on FIRE when he leapt over a lit candle on the dining room table. Because whatever entity in charge of things that happen in my life has impeccable comedic timing, this occured in the middle of serving brunch to my in-laws. There was black, singed kitty hair sprinkled all over the beautifully set table and brand-new wedding china.

Ok -now I am laughing out loud. No calling the SPCA, the cat was and is fine - just a surface wound. However, let it be known that Bath & Body Works will not likely be releasing a new fragrance called "Smoke and Burnt Cat Fur." Our apartment smelled like a taxidermy studio for weeks. My in-laws? Super impressed.

Despite the obvious deficiencies, my early New Year's Resolution (one of the many) is to have more meals at home that are not take-out, even if they involve cooking in the microwave or simply eating salads ... or ice cream. A fundamental flaw in my plan is that Jeff has been doing the grocery shopping recently. Why is that a flaw? I give you ... Ta Da! ... the actual contents of our pantry:

One economy-sized bag of mini-marshmallows

A case (!) of Red Bull

A jar of tartar sauce

One sad, lonely baking potato (slightly wilted, with sprouts)

Fossilized fluorescent orange Halloween "Peeps" in the shape of pumpkins

Wonder if Kraft.com has a casserole recipe for these ingredients? I bet Red Bull and Halloween Peep are a kick-ass combination.