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