My Trusty Little Brain

Much to my surprise and relief, I continue to feel better.  My balance is almost fully restored, my head no longer feels like a pressure cooker, and the constant fatigue has greatly diminished.  I am incredibly grateful that the adaptability of my trusty little brain has allowed me to reenter much of my normal life.  If I pay attention to not overbooking myself, (when I run out of steam, I feel pretty useless) I am good. 

Dr. “Macaroni”, my Johns Hopkins guy, has recommended the next MRI be scheduled at the end of January.  That will be four months from the first citing and help us ascertain whether the tumor is the same, growing, or shrinking (yeah right).  Once we have that information, we can make another decision, whatever that might be.  For now, watch and wait has turned out to be a good deal.  I feel very lucky.

Happy Holidays to everyone.  May many blessings be yours.

With love,

Karen

Casowasco Bound

During the first six weeks of being sick I canceled my November reservation for Casowasco.  Given how I felt, I could not picture being there.  Casowasco has become a magical place for many of my quilting friends and me.  Imagine, 25 women with their sewing machines, fabrics and fibers, creating, eating, visiting and being together in a beautiful setting by the lake for three uninterrupted days.  It may not be everyone’s idea of a good time but it is sweet for me.  Formerly an estate owned by the Case family on Owasco Lake, the Methodist Church has owned it for many decades and runs it as a summer camp and retreat center.  I have been spending two weekends a year there for ten years. Not going was disappointing but compared to everything else that was going on, it was small potatoes.  I gave it up because I figured I would be pre or post surgery or radiation at the beginning of November.  So much for my plans . . .

One of the first things I did, after the Johns Hopkins doctors convinced us to go home and watch and wait, was to sign back up for the November Casowasco weekend.  It was part of changing my perspective from acute to chronic.  Spending time with friends, even in my somewhat impaired state, seemed essential to accepting and integrating the new normal.  Although I still feel plenty “symptomatic” I am doing much better.  The petite brain tumor is undoubtedly still there but lots of things seem to be helping.  Weekly acupuncture, chiropractor, vestibular PT, daily walking, Chinese herbs, and my brain readjusting itself all seem to be working.  I am very grateful to be able to do much of my life more easily than I could for the first couple of months.  I never feel “fine” but better is way more manageable. 

I am packed and ready to go tomorrow morning.  Have a wonderful rest of the week and weekend.  Talk to you when I get back.

With love,

Karen

Family Adventure

So, we’re in “watch and wait” mode.  Each day is an opportunity to see how well I can manage and thrive (really?) with this new challenge.  I like the less symptomatic days best . . . what a surprise.  Learning what makes one day easier than another is not clear.  Good sleep seems important but there are so many other factors, who knows? 

My parents arrived from Colorado last Tuesday night and will be staying until this coming Thursday.  As you might imagine this has greatly altered the pace of our lives.  Sarah and Ethan have joined us for dinner each evening, the lovely Giovanna was here one night, and David arrived yesterday for the weekend.  There is a big difference between Ed and me grazing for dinner and feeding six or seven of us nightly.  Still, the fridge is loaded, everyone pitches in with preparation and clean up, and we have yet to be food deprived.  Of course I cannot write anything interesting or funny about all of this because some of the characters might read it, recognize themselves, and be offended.  Suffice it to say, we are a cast of characters.

I have started seeing a local health care practitioner who does a combination of acupuncture, Chinese herbs and cranial manipulation, as well as having a weekly chiropractor appointment.  Next Thursday I add a vestibular physical therapy appointment to the mix.  Each treatment holds the possibility of lessened symptoms.  On good days I am hopeful. 

With love,

Karen

The Short or Long of It

I have been puzzling over how to explain what we learned from the excellent Doctors Rigamonti and Kleinberg and their Physician Assistant Dawn Miller on Tuesday.  The short of it is, they sent us home to “watch and wait.”  So if you want to know the short version, that’s it, you can stop reading here.

The longer version, which the three-member team took 2.5 hours to explain to us, is more complicated, but of course with the same ending.  My understanding of what we were told is below.  I’m afraid it is not up to my usual standards of writing.

There are three treatments for acoustic neuromas; wait and watch, neurosurgery, and radiation.  Before we saw our Johns Hopkins team we were ready for radiation and needed more information about singe versus multiple doses.  We were definitely hoping to avoid surgery and not even considering, wait and watch.  We had read lots of information, assumed the tumor was growing, since I am uncomfortably symptomatic, and could find no good reasons for waiting.  We’re Americans, we’re “young” and healthy, I eat blueberries.  I want to be “fixed”, the sooner the better.

After spending an hour with us, explaining our options and answering our questions, Dawn, the PA, ratted us out to Dr. Rigamonti.  It’s her job.  She scouts out the patients and fills in the doctor before he sees them.  She spent a very generous amount of time with us and then privately explained to Dr. Rigamonti that he was going to have to be very clear and convincing with the two “informed” people in the next room - and he was.

Because I have only one MRI there is no way to know how much, and at what rate, the tumor is growing.  Dr. McNasty had already told us that it could have been around for 5-8 years.  Right now its size makes it either the largest of small or the smallest of medium tumors, very treatable.  Much to my surprise, the fact that I was asymptomatic on Sept. 2 and symptomatic beginning on Sept. 3 is not proof of growth.  It could be due to growth or any number of other factors. 

Dr. Rigamonti explained the unwanted possible outcomes of surgery, if done by a skilled surgeon and if it all went well.  Facial nerve damage, resulting in the inability to control the muscles on that side of the face, are under-reported and a serious possibility.  Hearing loss in that ear is almost assured.  Right now I have only lost 15-20% of my hearing and I must say, to me it is significant.  Complications that happen in only a small percentage of cases may seem reassuring, unless they happen to me.

Radiosurgery, which is his specialty, is no easy fix.  It often does not alleviate symptoms.  DAMN!  The unbalance, dizziness, and pressure in my head that accompanies each day with more or less volume, may not be relieved.  Radiation can cause swelling in the period 3-6 weeks afterward, as well as additional difficulties.  Hearing, which may initially be preserved, will almost certainly decline over time.  If the tumor is not growing, radiation’s effectiveness is questionable.

Dr. Rigamonti gave us a copy of a paper that he, Dr. Kleinberg, and others have recently authored and will be presenting at an international conference.  It reports their experience with 500 acoustic neuroma patients they treated between 1999 and 2007.  It includes information from other N.A. studies and explains some of the questions and confusion that we were unable to tease out of our reading. 

We were dismayed yet incredibly grateful that Dr. Rigamonti's honesty and recommendations will now be our path.  We will probably do radiation if needed in the future, but we are convinced that we have to be more certain that it is needed.  It seems rare that a doctor who is well known and respected in his field, would take such a generous amount of time to convince a prospective patient to wait and see.

For now, I am hoping to mitigate some of the symptoms with the help of vestibular physical therapy and other health care practices.  For a linear, otherwise healthy person, not having a clear-cut line to a fix requires some adjustment.  I’m busy adjusting, trying not to be too cranky about this, and appreciating all the help and support of our family and friends.  Thank you so much.

With love,

Karen

Unexpected Outcome

Today's appointments at Johns Hopkins were excellent and informative but had an outcome that was one we had not even considered.  I am still absorbing and coming to terms with its meaning.  It is late and I don't think I can write about it clearly tonight, but I am concerned that some of you may worry if you don't hear from me.  Below is a copy of the e-mail Ed sent out to family and friends.  It gives few details but is the gist of today's unexpected outcome.
With much love,
Karen 


From Ed
Just a brief message.  After a long meeting with some wonderful doctors and staff at Johns Hopkins today, we are going to put off treatment for at least three months.  At that point Karen would have a second MRI that could show if her tumor is actually growing.  Acoustic neuromas are generally very slow growing and may be dormant in at least 20% of cases.  The consequences of either surgery or radiation may be worse than her current symptoms, so waiting and checking later is the best option.  It wasn't something that we had really considered but the main doctor, who has handled more than 500 cases, strongly recommended this course.

Baltimore Arrival

We had an uneventful trip to Baltimore, arriving at 4:00.  We are staying at the “Daze” Inn, fine, clean, and I hope no bedbugs.  I thought perhaps we could pretend to be tourists, but then I remembered how I don’t feel so great. 

Tomorrow’s appointments are at 10:30 and 11:00 and they ask that we arrive an hour early.  We are only about 20 minutes away (the hotel gives us taxi vouchers) but we plan to leave here by 8:45.  Last week’s NYC trip is still fresh in our memory.

Thanks so much for all the supportive e-mails, calls and thoughts you have sent our way.  It is easier to be home and near everyone but it would be great if Johns Hopkins is a good fit for treatment.  I'm getting tired of this.

Will write more tomorrow.

With love,

Karen

Blueberry Voodoo

Those of you who have picked blueberries with me on Halls Hill know that I am slightly obsessed with their medicinal powers.  Ed calls it my Voodoo.  We used to pick at Grisamores, then a place in Spencer for a few years, but now Halls is the temple of choice.  Unless I pick and freeze at least 50 quarts of blueberries each summer, I am at risk.  I freeze the blueberries in empty, quart-sized yogurt containers.  I then have eight, half-cup servings per container and my health is protected for the forthcoming year.  If I plan to share them with others, we have to put away more than the requisite number.  This year’s haul was 62 quarts.

Everyone in the family has been pressed into service over the past dozen or more years.  David helps voluntarily when he is around.  Sarah has demurred for years, and my father pleaded old age when he turned 80, despite my promise that he could stop picking and take a rest as soon as he felt dizzy.  This was the first year my mother missed picking, since they returned to their new home in Denver before blueberries were ripe.  She loves being out on the mountaintop and is certain she is doing her part to keep me safe and healthy.  Ed is the most prolific picker of all.  No matter how hard I try, it is not possible to equal his speed.  Luckily, because he has retired, he was able to replace the lost help of Elaine and David this summer. 

Part of blueberry voodoo power is that we must pick and freeze them ourselves.  If we were to run out, store bought blueberries, purchased in plastic bags, would not hold the same mystical strength.  It leaks out as they languish in commercial freezers, one anonymous bag stacked upon another.

Last week, after the disastrous NYC trip, Ed and I went to see my wonderful doctor, to catch her up on what was happening and ask for some help.  My blood pressure was in an unfamiliar zone and I was functioning, but not so well.  I suspected I needed something beyond my usual voodoo.  We talked about the possibility of anxiety medicine, and my reluctance to partake.

“Are you sleeping?” she asked.

“Not much.”

“Are you eating?” she asked.

“Not much.”

“And your blood pressure is high, for you.”

“Yes.”

“I think you could use a mild anti-anxiety medication to help you calm down about this,” she said.

“Can I just take it when I need it?” I asked.

“Yes.”

“And will it compromise my health in any way for whatever procedure we choose?”  (As if not sleeping or eating and high blood pressure would not.)

“No,” she said.  “It will not interfere with anything.  It will just help calm you down.”

Still, I had to think about it.  After all, orange plastic vials containing purchased pills from Rite Aid are absolutely anti-voodoo.

“Give her a prescription,” said Ed.  “We’ll put the pill in a blueberry.”

Now you know.

With love,

Karen

The Schmutz Factor - Or Not

Since there is no news on the Acoustic Neuroma front, the appointments having been scheduled for next Tuesday, I thought I would share some thoughts on our meeting with Dr. McNasty at Weill Cornell last Friday. 

I think “schmutz” is a funny word.  Maybe it is funny because I am Jewish but it might even be funny if I were not.  So when, after a few minutes of being in the presence of Dr. McNasty, who I had discerned was definitely Jewish, and with whom I was unable to establish a human relationship, I decided to pull out the schmutz connection.  As an aside, the only time I remember actually getting a laugh when I was a child was when our old doctor used his ear scope to look into my sister’s left ear (she was a notoriously difficult patient) and I looked into her right ear and said, “I can see you Dr. Conway.”  I was only about 8-years-old and both the doctor and my mom laughed out loud.  I felt like I had scored a hit. 

So when Dr. McNasty took a cold stainless steel cone and inserted it into my right, impaired ear, it seems like an opportunity to turn this “inhospitable” visit around, “Do you think you could just take out some schmutz and make it all better?”  I asked.  “Save the surgery, I promise, I’ll pay you the same amount.”

“Everyone wants me to do that,” he said in the most humorless, unresponsive voice.  Really, I thought.  Really?  Everyone asks you to remove the schmutz and make it all better?  And still offers to pay you?  Is that possible?  Has everyone even heard of the word schmutz?  Doesn’t schmutz make you smile just a little bit because it sounds so funny and isn’t it is sort of a secret password between us, the chosen people?  Jewish?  Saying schmutz counts for nothing?

Indeed . . . nothing.  The meeting continued on its downhill slide to emotional extermination.  Did he not grow up in an extended family in which everyone scanned the newspaper for bad things people had done, hoping that none of the names were Jewish?  Did he not hear his grandparents talk about who was Jewish and who was not and who might be but had changed his name?  Does he not remember that it was bad if something happened to someone Jewish but dreadful if someone Jewish was the perpetrator?  Does schmutz have no cultural value these days?  Apparently not.

With love,

Karen

A Voice Called Wanda

The voice of Wanda was my frantic Friday morning contact with Johns Hopkins, just before we left for the trip from hell to NYC.  On Monday morning I faithfully completed all the tasks she had assigned me, "Fax the radiology report and FedEx the CD of the inside of your lovely head, then wait for a call from me to schedule you for a visit."  I did her bidding, including telling the young Fed Ex employee how important it was that he send this to exactly the right place since it had a photo of my brain tumor on it.  I just couldn't help myself.  I hope it gave him something to talk about with his colleagues.

I waited . . . until Tuesday afternoon for her call.  When she did not, I left a message, and then a couple of hours later, I left another message.  Both messages were gentle in an imploringly annoying sort of way.  I called her again this morning because I thought that the mysterious Wanda might more easily be awakened in the morning.  She called me back a little while ago and was very kind.  She answered all my questions, explained that within 15 minutes of its arrival she really did listen to each message I had sent, and that she was now ready to schedule the appointment.  I had done everything right and the doors to the kingdom have now opened.

I now have an appointment at Johns Hopkins Stereotactic Radiosurgery center on the morning of Tuesday, Oct. 12 to see two doctors, one about FSR (radiation treatment) and one about surgery as an option.  This feels like the right thing to do.  We will leave Ithaca on Monday and return home on either Tuesday of Wednesday of next week.  Whew.  We are moving right along.  If I should choose to have treatment with them, there would be about a two week wait.  So for those of you who read quickly (Aafke), NO, I am not going to be operated on next week!  Just a consultation and I hope neither of them is named Dr. McNasty.

With love,
Karen

Week Two Begins

I never thought I would join the ranks of the gazillion bloggers already covering every possible topic on earth.  But after shooting out two "mass" e-mails to treasured family and friends, I have become self conscious about invading everyone's e-mail boxes with my updates.  Then as the replies rolled in, g-mail's inability to deal with the long list of dozens of replies and re-replies became an additional issue.  I began to think about using a blog as a non-intrusive way of letting everyone know what was happening.  So here it is, and here is what has transpired recently.

Last Tuesday, I asked Ed if he would accept the role of chief researcher.  He has accepted and moved ahead with his usual complete determination and thorough commitment.  By the time we are through with this journey, he will have added Acoustic Neuroma/Vestibular Schwannoma to his previous specialties of alfalfa, fly fishing and fly tying, and everything else in the natural world.



We have spoken to two Ithaca acquaintances who have been treated for A.N.  One had surgery four years ago to remove the tumor.  The other had fractionated stereotactic radiotherapy (FSR) eleven years ago to kill the tumor.  Both are pleased with the results and recommended their choice of treatment.  We are researching both options but I would surely prefer FSR to brain surgery if that is possible.

In the week since I was diagnosed we have been feverishly gathering information, talking to people, embracing support from our friends and family, and making plans for our next exploration, a trip to Johns Hopkins in Baltimore.  Our first trip, a grueling travel day to NYC, and a meeting with an otorhinolaryngologist at Weill Cornell Medical Center, hereafter known as Dr. McNasty was brutal.  The less said about him the better, since although he is a noted ENT surgeon, his ability to understand that someone with a newly diagnosed brain tumor might need a slight amount of empathy did not seem to be within his ability.  I really bottomed out when he told us that if we chose radiation my balance and dizziness would not be restored but might be mitigated with physical therapy.  This may or may not be true but it is a crucial point for me to understand in order to make a decision.  An important lesson learned was to avoid traveling a long distance to an important medical appointment on the same day of the appointment.  Never again.

 We are now in the process of attempting to set up consultations with doctors at Johns Hopkins where there is a large Acoustic Neuroma Center.  Johns Hopkins seems to specialize in both surgery and FSR which would enable us to gather information on both choices at one highly rated medical center.  We sent them all of my records on Monday which I know they received by this morning.  I made several follow up calls today with no results but messages left on answering machines.  I will keep calling tomorrow. 

We did learn a couple of other things from Dr. McNasty.  This type of tumor is very slow growing and has probably been around for 5-8 years!  A few of the minor symptoms of temporary dizziness and temporary hearing loss that I have had in the past couple of years were probably caused by the tumor.  I just assumed they would go away, and they did, for a while.  Important warnings for all of us to know about, for ourselves and others.  Five to eight percent of all brain tumors are acoustic neuromas, not common but not that rare.

Each day I attempt to make decisions about what I can do, given my compromised balance, weird dizziness, and limited energy.  I spend some time keeping up with important tasks and a little time doing something "normal" with friends or groups.  I think that days may be getting easier as I become more accustomed to the unpleasantness of being unbalanced and my anxiety about the unknown decreases.  

So that's what has happened until now.  We deeply appreciate all the calls, e-mails, cards, visits, offers of help, and gifts of food that have already come to us.  Having been incredibly fortunate to never have been on the needing end of this, I never understood how important this support would be.  It has kept us afloat.  I thank you so much and want to express my gratitude to each of you as time and energy allows.

With love,
Karen