Tuesday, April 28, 2015

All brain tumors are bad!

I was diagnosed with a meningioma on March 6, 2014.   I had surgery to remove it on June 16, 2014.  I am glad that it is gone, but no matter what anybody says There is no such thing as a "good" brain tumor!  This article really struck home for me.

The Brain Tumor Is Benign, but Threats Remain

M.R.I. brain scans. Such images showed a benign, though troublesome, tumor in the author.Credit iStock

In the frightening world of brain tumors, “benign” is a good word to hear. But even a nonmalignant tumor can be dangerous — especially if, as in my case, it goes undetected, becoming a stealth invader.
“Anecdotally, we often hear about women who were originally misdiagnosed — sometimes for years,” said Tom Halkin, a spokesman for the patient advocacy nonprofit National Brain Tumor Society.
When I developed tingling in my limbs 12 years ago, two Los Angeles neurologists diagnosed Guillain-BarrĂ© syndrome, a disorder in which the immune system attacks the nervous system. The symptoms of numbness and weakness ebbed and flowed for three years. Then one day, I couldn’t slide my right foot into a flip-flop. This got me a ride in a magnetic resonance imaging machine, which revealed a brain mass the size of a tennis ball. It was a benign meningioma, a tumor that grows in the membranes surrounding the brain and spinal cord.
After the diagnosis, I consulted with Los Angeles surgeons. “We’re going to cut your head open like a pumpkin,” one told me. I chose someone else, who had a stellar reputation, who was compassionate, and who did not compare my skull to a squash.
“You’re cured,” he said as I awoke in the operating room. Recovery took about six weeks and went smoothly, except for my right foot, which remains partly numb. I relearned to walk and to drive with my left foot, using adaptive equipment. Had my tumor been diagnosed earlier, I might have avoided a large craniotomy and permanent foot issues.
“It’s critical to find these tumors when they are small, when radiosurgery is an option, rather than when they are very big or produce a lot of symptoms, at which point it’s not optimal to treat them without doing open surgery,” said Dr. Susan Pannullo, the director of neuro-oncology and neurosurgical radiosurgery at NewYork-Presbyterian Hospital and Weill Cornell Medical College.
Nonmalignant meningiomas are twice as common in women as in men, though no one is sure why. Studies have examined the role of hormones and reproductive factors, but “nothing conclusive has come out of these studies,” said Jill Barnholtz-Sloan, a brain tumor epidemiologist at the Case Western Reserve University School of Medicine.
The only known causes for meningiomas, usually benign, are rare inherited genetic syndromes and therapeutic doses of ionizing radiation to the head and neck. “There’s been a lot of controversy about dental X-rays, cellphones and power lines,” Dr. Barnholtz-Sloan said. “Most studies have shown inconsistent or negative results.”
A challenge of diagnosing meningiomas is that they often grow slowly and can mimic other conditions. “The symptoms can be very subtle,” said Dr. Jon Weingart, a professor of neurosurgery at the Johns Hopkins University School of Medicine. “The brain can accommodate quite a bit in terms of molding and shifting.”
Although there have been no major studies of gender bias and brain tumors, a 2014 study in the journal Diagnosis found that women with strokes were 30 percent more likely to be misdiagnosed in emergency rooms than men. Dr. David E. Newman-Toker, an associate professor of neurology at Johns Hopkins who led the study, said it was reasonable to believe that women with other neurological disorders also had a higher likelihood of being misdiagnosed.
“Misdiagnosis is the bottom of the iceberg of patient safety and medical error,” Dr. Newman-Toker said. “We don’t have great data, because diagnostic errors are not systematically tracked or aggregated in any way.”
The symptoms of Byrdie Lifson-Pompan, a patient advocate in Los Angeles, started 11 years ago, when she was 38 and had an eye twitch. She consulted a prominent neurologist, who chalked it up to stress, and prescribed Xanax, a medication for anxiety. When her symptoms worsened, the neurologist ordered scans and concluded she had a severe form of Bell’s palsy, a disorder that affects the facial muscles.
A year into the ordeal, Ms. Lifson-Pompan went to a Little League baseball game, where she sat next to another parent, a plastic surgeon, who urged her to see a facial nerve expert. She did, and that doctor “put my scans up on a light box,” she said. “With a purple Sharpie pen, he circled the brain tumor,” a benign neural ossifying hemangioma, she said.
Complicated surgery and a long recovery followed, though she still cannot move the left side of her face or close her left eye.
After my surgery, I had regular follow-up scans; the reports indicated no tumor recurrence. Last year, I changed insurance plans and doctors; a new M.R.I. test and a review of previous scans revealed the meningioma had started to grow back five years ago, something my previous medical team had missed. The mass was pea-size, but the time for watchful waiting had passed. I had stereotactic radiosurgery, an outpatient procedure like something out of a sci-fi movie, in which beams of radiation zapped the tumor.
When surgery is necessary, there are technologies “that allow us to do things that were never possible in the past, as more and more surgeons are becoming interested in developing devices that allow better surgery with less complications,” Dr. Pannullo said. Two less invasive treatments that show promise are focused ultrasound, already in limited use, and special heat therapies, she said.
Another option is so-called keyhole surgery, which involves operating through small openings in the skull, such as near an eyebrow or behind an ear, though not all neurosurgeons like this approach. One concern is that if something goes wrong during the operation, doctors may have limited brain exposure to correct the problem.
Also, many patients with benign tumors are not candidates for keyhole surgery, Dr. Weingart of Johns Hopkins said, because the tumor must be small enough and in the right location. Even so, he said, surgery has become much safer over all in recent years because of advances in imaging, anesthesia and critical care. “Patients who have large tumors with a lot of swelling and mass, which require large craniotomies, can be expected to be out of the hospital in two to three days and back to their normal life within four to six weeks,” Dr. Weingart said.

Monday, April 27, 2015

yes, it is spring!

It's funny, for the last few days, more or less, I have been thinking about writing about spring.  About all of the trees and plants getting greener  I have been waxing poetic, mostly in my head, to myself, about "the circle of life" or something like that.  Maybe not as trite as that though.

I love winter and the beauty of snow.  I don't mind the cold if I am dressed warm enough.   But then spring comes and I fall in love with this season all over again.

It comes every year.  Not everywhere in the world I suppose.  Some places have fewer and more subtle season changes.   But here, in the D.C area, the seasons tend to be predictable, even if on a day to day basis, not so much.

Here are a few pictures I have taken with my new smart phone.   I am still not totally in love with this phone- it is actually a pain in the butt in oh so many ways.  But, as the seasons can change, so can I.


Looking toward the neighbors house- view of my favorite lilac bush

Close up of the lilac

Looking at the white azaleas and the back of our house

Sunday, April 26, 2015

What should I call this post?

I am all over the map with thoughts and feelings and discoveries (about myself of course).  I don't know where to start.   My former therapist told me "start in the middle".  But I don't even know where the middle is.

I am, emotionally and physically, here, there are everywhere.   I do feel better.  Much better than before I had my thyroid removed.   I am not sure how much of that is just the relief at getting that nasty, huge thing (goiter) out of my neck- out of my body.    I feel like I have been carrying a huge weight around my neck for years.  Well, I guess I have been.  Not huge in terms of big things in the world, but huge in terms of something that affects you breathing and ability to swallow.    Constantly wondering if you're going to choke.  Or stop breathing.   Or maybe even not wake up one day.

Yes, I know, I am still overweight.   And I still have more chins than I need.  But I have a neck now.  Not a "fat blob" as one of the many doctors I have been to told me.  

"Enough".  A word I use on myself a lot.  Too much.  I don't have "enough" time.   I am not a "good enough" housekeeper.  (something that many don't care about, but I do).    I don't write to my kids "enough".   I am not nice "enough" to my husband.  I don't do "enough" in the yard.

I don't think I will ever be just plain "enough" for myself.  To be totally happy.  I am able to be totally happy in the moment- when something good happens in my life.  Going to a school play with young people that I know performing.   Happiness personified.   Giving a gift.  Yup.   Helping a new mom learn and realize how amazing she is.  Absolutely.   The way I feel when the house is really clean.  Oh, heaven!

I think one of my problems is that there is not enough time.  Or at least I tell myself that.  I know that the amount of time I have on earth is finite.   I am afraid that I won't be ready when it is time to leave.  I hope to live for many many more years.   But I have to decide how I am defining living.  Hard to say.  

Here's what I think I want.  I want to feel like I have really accomplished something.  To be recognized for something wonderful.   (again, I don't feel like I am "enough"). I want a Nobel prize for raising five children into adulthood alive and kicking.

There are not enough of me. (there *is* not enough of me?)  By that I mean, I feel fragmented.  I want to sew and make beautiful clothes.  I want to knit and make gifts.  I want to make art- through fabric or photography, through all sorts of means.   

I wish that cleaning house was recognized as an art.  I have tried to communicate this so many times, to so many people that I feel like it is a lost cause.   There was an article called "The Zen of Sweeping" that I read years and years ago.  The author describes the peace and well being that come from the act of cleaning.  Or the act of making clean.   I don't know which.   When I clean the kitchen counters, table, floor and make everything shine, I stand back and enjoy what I have done.  It is beautiful.   It is "art", in my eyes.  It lifts me up and energizes me.   Bathrooms, carpets, anything that I make clean, is beautiful.  I tell myself that if I lived alone my house would be spotless and I would be so happy.  I sort of think I need to file that away as a fantasy.

A couple of days ago I took the leaf blower and I blew all of the leaves and crap out of the garage.   I am not sure if anyone even noticed.  But, now, whenever I go into the garage, I feel this wonderful peace because the disorder is now in order.  As it should be.,To me anyway.  

When the kids were little, I had way more energy.  I did loads of laundry and folded it and put it away.  And I was systematic.   I had seven piles, one for Nick and me, and a pile for each kid.   Then there were columns- underwear, socks, shirts, shorts, long pants.   For all of us.    It was so satisfying.   But, I know that it was not always as wonderful as I remember it.  I know that at the end of the day I was "mothered out".  I was ready for the relief team to come in.

I think that I am always seeking my own approval, and I am my own hardest judge.   I want credit for every little thing I do.  I want to be acknowledged for putting tings away, for running the vacuum cleaner.  For mopping the floor.   But until I can tell myself that I have done a great job, I may not feel like I am enough. 

I am a bit like a child.  I want to be told "good job".  Just like a three year old when he draws a something - elephant?  bird? house?- whatever it is, you say "wow that's great, can you tell me about it".   It helps fill up the self esteem stores that we all need.   And I am not good at doing that for my own self.   Oh well.  

And then there is the reality of age, and again, time.  I have a harder time of getting up and down.  Just the act of getting into and out of the car is harder than I think it should be.  I am not as fast as I want to be.   Okay, I know, I am being hard on myself again.  But, I know that there is an element of truth there too.   I tell myself that Ia m not afraid of getting old.  Then I deny that I am getting old.  No, not me.    Even when I start goingback to the gym.  Even if I get really buff and lose a hundred pounds, I will still be in my 60s.  No way around that.   I cannot make myself younger.  I cannot turn back the clock.  Oh, how I wish I could sometimes.

Who doesn't want a do over now and then?  

And to end this ramble today I will close with a picture of one of my loves.  Tigger, my sweet kitty.  he is almost 16.  he doesn't think about getting older, or worry (as far as I can tell).  This morning, when I opened my eyes, Tigger was staring into my face, waiting for me to wake up.  What a nice way to wake up!


Sunday, April 12, 2015

Sunday afternoon

Pretty much every day I think about writing here. In my blog.   And when I don't, I feel like I should have.  In some perverse way, blogging is like homework.  Something I feel like I have to do.  Something I put off.  And something I usually feel really good about when I am done.

Procrastination.  Why oh why do I do it?   I think everyone procrastinates to some extent.   But I don't know why.

It's like the motto "queen of unfinished projects" is a point of pride.  The more activities that you (I?) have going at once, the more seemingly productive one feels.    There is much humor about this.   I know and appreciate this humor as it applies to me too.  But, having all of these projects hanging over my head, waiting to be done, makes it harder to finish, or sometimes even start.

I have fabric.   I bought each and every piece of the fabric I have with "something" in mind.  Sometimes that something was a specific pattern I planned to make.  Sometimes "something" was more vague.  Like, thinking that it would make a nice dress/ pillow/ place-mat/ shirt-you name it.  I even have fabric and patterns all pinned and cut out, ready to sew.  Problem is, they are in a size 2, that I was going to make for a toddler who is now eight years old.

And I have to fight the urge to go buy even more fabric.  It is so beautiful, I just want to own it!

And then there is the yarn.  the photos I have blown up to poster size that sit in a portfolio folder, the canvasses I bought with the thought of yet another creative thing I was going to do.  What was it?  I dunno.

I have binders full of the pictures of every item I have every thought I would like to knit, sew, scrapbook, cook etc.   And occasionally, I see something online that I love so much I print it to put into a binder- only to discover that I already printed it and put it into a binder.  Two years ago.

I have new eyeglasses to pick up.  Laundry that needs to get done.  Trashcans to empty.  A dress that is sitting next to my sewing machine waiting to be converted from cut pieces of fabric into something wearable.   And here I sit, in front of my computer at almost 2:00pm in my pajamas.

I do have an excuse.  A pretty good one.  I am recovering from surgery.  It's almost one week since my thyroid was removed.   I feel well.  In fact, I probably could even say I feel great!    I still have strips of surgical tape on my neck, and bruises from IVs and heparin shots.   But I am not in any pain.

Actually, for the first time in a very long time I feel like I am getting better.  Healthier.  I feel like I have been fighting for years,  And years.  And years.  Twenty years from diagnosis to treatment.   Numerous doctors who as much as patted me on the head while my body was fighting itself and on the way to self destruct.  I have no doubt that the goiter/ thyroid lump that was taken out of my body would have eventually killed me.   I don't know if I would have had years of decline before I died.  Or if I would have finally gotten diagnosed after treatment was not an option.  Needless to say, I am happy I am alive today.  I am happy that I was heard and finally taken seriously.  I am thankful for a new acquaintance who somehow, knew that something was wrong and sent me to her doctor.  I have been trying to advocate for myself all of these years, but have not succeeded, partly because I was not totally sure what I was asking for.  I feel annoyed.  Angry maybe?  Dumbfounded.   How many times have I heard, "oh yes, you have thyroid disease" and had tests and ultrasounds and still been left to continue growing this thing that wanted to cut off my ability to breath?

So, today, I am breathing deeper.   I am feeling better.   I will be alright.  Onward to newer and better  things- whatever they may be.

Meanwhile, I just got an email telling me that I have aged out of the bone marrow registry.  Ha!


I just decided to add before and after surgery pictures:



Tuesday, April 7, 2015

Surgery went well and I am home

Surgery went well. I don't remember much about being intubated except that they went in through my nose. My throat is sore and I have a cough which I am sure is normal. Other than that I feel great! I can actually see a difference- the big lump in my neck is gone!

I asked the surgeon to take a picture of my goiter/ thyroid which she did. I saw the picture- it was a huge thing. She (surgeon) said it was hard and removing it was like chipping at cement.

I will see the surgeon again next week and learn what the pathology is. Hopefully no cancer, but somehow I am not too concerned about that.

I am attaching a picture that Nick took this morning at the hospital.

Taken at the hospital a day after surgery.

Sunday, April 5, 2015

It's all good

The results of the MIR I had last week, according to my neurologist and the nurse at Johns Hopkins, are negative.  No, that doesn't mean I don't have a brain.  IT means my brain does not have any new tumor growth.  Or any tumor at all.   I am still having headaches, but am hoping that a medication change will correct that soon.

It is 7:00 pm and I am still in my pajamas.   Well, why not?   Actually, I usually take a shower in the morning before I get dressed for the day.  Since we have to get up before the crack of dawn tomorrow, I am going to get my shower tonight so I don't have to at 3:30 in the morning.

Why are we getting up so early you ask?    I am having my thyroidectomy tomorrow at 7:30 am.  I have to be at the hospital by 5, and it is a long drive.   

I know that this surgery will be a lot "easier" than my brain surgery, but, it is surgery.  I will have anesthesia.   I will be cut open and then stitched up.  Not fun.  I think if I had not had brain surgery less than a  year ago, I would be freaking out.  But I am not.  I am pretty calm.   I am convinced that after this is done and I am all healed up I will feel better than I have in a long time.  yes I will!

Buddy and Tigger aren't worried!

Thursday, April 2, 2015

Here I am again!

I am counting down until my thyroid surgery.  Today is Thursday.  Surgery is the Monday coming up.  Four days as I count.

I am a bit stressed and worried and scared.  I think that's normal when you know that you will be getting powerful drugs pumped into your body so you can be cut open.  And hopefully, repaired.

Had an MRI yesterday.  headaches are still happening.  I looked at the disc with the MRI imaged form yesterday and compared them to the pictures from last year when I was first diagnosed with a meningioma.   I have my thoughts on what they look like, but since I am not a professional, and do not really know how one reads MRI images, I'll keep my opinion to myself for now.

First we put the orthodontist's kids through college with five kids in braces.  We have kept obstetricians all around the world employed delivering our five babies.

And this is the era of surgeons I guess.

More news as it comes in.