The Calm After The Storm

A month and a half since my last blog...  so much has happened.  Even though I am in the midst of treatment for my breast cancer, I actually feel much better.  

Ok, so I made one unrecoverable mistake...  Discussing the options with my first oncologist led me to believe that most likely I would be having chemo first, then radiation, then estrogen "blockers".  So, being a planner, I decided that my hair was too long to be falling out all over the house so I went to a hair salon and said "Just cut it short."  It didn't really matter what it looked like, right (?) since it would all be gone in a few weeks.  So, chop it off they did.  Easy to take care of and much cooler for Florida summer living.

Back to the oncologist for the oncogene results and she says "Good news!!! " With a range of 1 to 100 and '1' being awesome, my results were a FIVE.  "Very good results, so good in fact, that you don't need chemo!!"  Ok, so my first thought was 'my hair!!!' but that passed quickly. Mostly, I am just so grateful not to need chemotherapy.

Skip Chemo, straight to radiation.  What a relief.  The people at South Florida Radiation Oncology on Military Trail in Palm Beach Gardens are the best.  Six weeks, five to go, but at least it's with some of the nicest people I've encountered in this journey.  From the receptionist to the oncologist, they are all amazing.

Read, read, read.  Few people suffer any adverse side effects.  Painless.  Hmmm.  Can this really be so easy?  Takes a week to have my settings designed perfectly so only the breast tissue is radiated and as little as possible of anything else.  They actually made a firm foam impression of my body lying in the correct position so I can get into the same position each time.  Three tattoos and a sticker with an "X" that marks the spot and I'm set to go.

First treatment comes and I'm a little nervous not really knowing what to expect.  I close my eyes.  Try to clear my mind.  The machine is circling around me making buzzes and beeps.  It feels as though an alien is inspecting me.  Lead teeth under the glass open and close.  Wait... I think I can feel warmth in the area they are radiating.  Yes, if I really concentrate, I can feel the radiation flooding my breast with warmth.  Interesting.  At that moment, the technician walks in and says, "Ok, we are going to start now.  Lie still."  

So much for my acute awareness of my physical senses.

One great thing I've learned so far is that, as far as for me, getting my actual 'plan of attack' decided was the most difficult part.  Not knowing what I needed to do and having to decide what was best -- total mastectomy vs. partial, chemo vs. no chemo, which doctors I felt most comfortable with --- that was the hard part.  Those decisions behind me, the fog has lifted and the stress is gone.  I would have thought the treatments themselves would be stressful, but I just lie there and imagine all the little cancer cells left behind are shriveling up and dying.  In at 11:15 am each day and literally done by 11:30 am.  Not bad at all so far.  

Today I finished treatment #8.  Twenty-two to go and this little stop of my journey will be complete.

Wonder where I'll travel next...

No Flying Snakes Please

Somehow this whole ordeal is bringing thoughts and memories of all kinds into my head.  I'm writing them here because it is cleansing to me somehow.  Once I get it out, new things can bubble up to the top.  And, after all, no one has to read this if they don't want to.

When I received my brain tumor diagnosis 16 years ago, there was a distinct advantage, however strange that may sound.  That advantage was that I had a large mass in the frontal lobe of my brain which, in retrospect, seemed to have the effect of causing difficulty actually understanding the implications of what was happening.  It was quite a long time before I actually felt 'reconnected' to the world in the same way.  I'm not sure I really ever have connected in the same way - maybe I have just become accustomed to feeling the way I do now.  

Why I keep thinking back to that time in my life with the arrival of my breast cancer diagnosis is a mystery to me.  Maybe it brings me comfort knowing I have come a long way since then and I am telling myself I can do the same thing now.  I'm not really sure.  What I do know is that I've been thinking about flying snakes an awful lot lately.

No, that wasn't a typo.  Flying snakes.  Really.  Let me explain.

My mother was alive when I underwent my brain surgery (easy part) and subsequent recovery (hard part).  I'm not sure what I would have done without her, but that's another story. 

It was a Saturday morning, May 1, 1999.  My husband (now an ex) and I were taking my parents and his mother to the Cayman Islands the following day for a one-week vacation.  His mother was actually on a plane enroute to Florida from New York so we were busy packing and preparing for our trip.

That morning I woke up and wandered out to the kitchen.  My husband was at work and I gave him a call.  When he answered the phone, 'gobbly-gook' just came out of me.  He said "Whhhaaahhht???" and I again said some gobbly-gook. Totally unintelligible.  We laughed as it sounded so silly and he said to go make a pot of coffee and call him back when I woke up.  Such the obedient wife (lol) I did exactly that.  As I was pouring water into the old-fashioned drip coffee maker, I noticed the right side of my face felt like it was sliding off like melting wax.  It was so odd a feeling, that I turned to go look into a mirror in the hallway to see what it looked like.  At that moment, I realized I could not swallow.  

This is definitely one day that I am thankful to have had nursing training.  I knew at that moment I was having a stroke.  I went to call my husband but my fingers wouldn't hit the right keys - I would try to push the 9 and it would push a different number, for example.  It started to feel as though there was a bottomless pit and i was being sucked into it.  It was as though a wind was trying to push me down into it and I was hanging on to a tiny ledge at a circle at the top, my only connection to the world.  I needed to call 911.  This is where my nursing training came in handy.  Maybe someone reading this will think of it someday if they find themselves in the same position.  Instead of using my dominant right hand, I switched hands and used my left hand to push the numbers.  That side worked fine.  The brain is so powerful and I have gained so much respect for this amazing organ over the last 16 years.  

What I didn't remember was which side controlled speech so when the 911 operator picked up the phone, I tried to say 'I'm having a stroke!' but again I spoke in that now-familiar gobbly-gook. Wow!  That's why I talked to my husband that way and we both thought I was just groggy!  The power of our brain really became more evident to me in that moment than it ever had been before.  The operator was dispatching EMS to me and asking me questions.  I couldn't speak clearly, but you would think you could at least make a sound that resembled a yes, no, uh-huh, something!  Not possible...  Just sloppy bleeaah bleeah bleeah (aka gobbly-gook)

What does this have to do with flying snakes you ask?  Ok, let me explain.  I was taken to a local hospital and admitted to ICU.  Arriving in ICU, I still had no idea what was happening or why I had the stroke.  The neurologist who was on call that day, thankfully, came in and told me about the diagnosis.  Ok, ok, the snakes.

My mother was the first to arrive at the ICU.  At this point, my speech had returned somewhat and she said "What HAPPENED??"  I told her.  I had a brain tumor.  She said, "No, really.  Why are you in here????"  I told her, really, I have a brain tumor.  I couldn't get her to believe me for several minutes.  You see, my mother had this strange saying.  When we were sick or complaining about some ailment she would jokingly say, "Oh, come on... it's not like you have a brain tumor!"  But this time she couldn't say that.  It was a brain tumor.  I could see she was thinking the same thing as me when I looked into her face.  Oh no... what could be worse than THIS????   One of us asked that question out loud.  I can't remember who.  We thought for a few minutes and then realized there was something that could be worse.  It could have been my daughter.  

From then on, and to this very day, I like to imagine that my daughter had been diagnosed with a brain tumor and that an angel had come to me and said she would give it to me instead if I wished.  POOF!!!  Wish granted.

For me, whenever something bad happens, I always try to think of something that could be so much worse.  Then all I have to do is be glad that that didn't happen.  

Now (here they come) I absolutely hate spiders and snakes.  Not much we can do about them.  But close your eyes and imagine we lived in a place where snakes curled up around tree branches and hid in roof gutters or on top of high cars and buildings.  Now imagine they could actually fly!  Fast, too, so they would shock you when they suddenly wrapped around you and started snapping at you.  Oh my god, I would hate that.

So, when all else fails and it seems like the worst thing that could happen has finally happened, and you don't even want to imagine your own child or grandchild sick or hurt, think of the flying snakes.  After all, if there were such a thing you surely would wish there was not.  

POOF!!!  Wish granted.

A rose is a rose... but is a nurse really a nurse?

So the answer is finally here: I have cancer.  Funny, I always thought information like this would hit really hard, that it would be an 'oh my god!!!' kind of moment... but it wasn't.  Somehow I just knew so there was no real shock involved.  Not even a little bit of a surprise.  Honestly, I think I would have been more surprised if they had said it wasn't cancer.

What I do find surprising is the level of compassion, empathy and willingness to help on the part of health care providers I am dealing with.  For a few years around my daughter's birth, I worked in a doctor's office.  If someone had difficulty for some reason, maybe a baby born with a birth defect or a stillbirth, something I knew was causing them mental distress... I would help them a little more knowing they needed it.  Compassion, after all, is an integral part of nursing.  Without it, who would even want to be a nurse?  

But, ask your doctor's nurse sometime if she is an LPN or RN.  No is usually the answer.  They are often not nurses at all, just people willing to work for a little more than minimum wage.  They put on the scrubs, hang a stethoscope around their neck and gladly label themselves as a nurse.  But be sure not to make any assumptions here.  A doctor can call anyone in his office a nurse if he/she so chooses.  The actual Miriam-Webster definition of a nurse is: 'a person who is trained to care for sick or injured people and who usually works in a hospital or doctor's office'.  Trained by who?  Could be the office manager, doesn't matter. There is much lacking in that antiquated definition.  A nurse should be someone who cares for people, who will do his/her best to make the patient's and their family's experience with illness a little better than it would have been without having him/her be part of it.  Someone who understands how stress affects a person's ability to remember what was said and may influence their ability to reply quickly or to make many decisions.  Someone who knows they have to be the stronger one and wants to help in any way they can. Someone who actually has the knowledge and background to enable them to do so.  Where did all those nurses go?

What has been so difficult for me in this new journey hasn't been dealing with the fact that I am somewhat deformed now and need to decide how to handle what could ultimately be a terminal illness.  What has been the most difficult has been dealing with the insensitivity of the staff in the doctor's offices.  The doctors are great!  Unfortunately, most of the interactions I have are with office staff.  "I didn't get the pre-op orders from your surgeon, I need you to call them and tell them to fax them to me."  So I do.  "They don't need pre-op orders.  Just tell them to send us medical clearance for surgery."  So I do.   "There have to be pre-op orders, ..."   Doesn't anyone just pick up the phone and call for the patient anymore?   That's what I used to do.  Would I ever have said to a patient, especially a patient with a known brain injury, "Don't you remember (very sarcastically), I TOLD YOU I would call you when I heard from..."  My mouth just hangs open in utter disbelief that people can be so uncaring and rude.  Doesn't anyone realize that inside my mind was the dialogue "I might have cancer, I might have cancer, I might have cancer."

But have you noticed what is happening to us as a society?  People are becoming less and less accustomed to speaking to each other.  Courtesy is unnecessary when there is no interaction.  We are forgetting how to be courteous to each other.  When is the last time you called an office or business that a person actually answered the phone, a real person?  "Your call is very important to us... please listen to the options carefully because they may have recently changed."  Even people in relationships with each other sit at restaurants and other public areas with their faces in their phones not even acknowledging each other.  Is it time for us to add Social Readiness and Interaction Training to the required courses for high school students?  

I have been very proud of my grandson because of how well he has been taught to be polite.  What astounds me is when a little 3-year-old boy holds the door for someone and they don't even acknowledge with a 'thank you.'  He sets out in anticipation to hold the door and get to play the 'thank you' and 'you're welcome' game.  He seems so confused when there is no acknowledgement.  Not meaning to be rude he usually just looks up and says "You're supposed to say thank you."  Yes, Tucker you are right!  They ARE supposed to say thank you.  Are we so preoccupied in our own self-importance that we don't even have to time to set this example for a young child?  To show some appreciation so he will have the incentive to want to keep doing these things?  I don't think those things are that important to anyone anymore.  

Ok, so I am approaching my sixty-first birthday and all old people say 'things are not the way they used to be.  We used to..."  Is that all this is?  Is getting old making me picky about unimportant things?  I honestly don't know.  Maybe as we get older we start to view the world as such a hostile place that we just don't want to be part of it anymore.  I'm not quite there yet but I do find myself wanting to be around people less and less.

Fortunately my friends are considerate and compassionate.  It is strangers and people I am forced to deal with that irritate me.  As I have gotten older I have learned to pick and choose my friends carefully.  Maybe with all this complaining I will get knocked off a few of their lists.  

So it's more than 2 cents (why do we even have pennies anymore, they're not even worth bending over and picking one up when you see one).  I'd say I just unloaded at least a good $2.75.

"To feel nothing... what a beautiful feeling that is!" -- author unknown

As with every new journey, you begin to see things you never saw before.  As a brain tumor survivor, I used to feel like pink ribbons were EVERYWHERE!  Every pharmacy, department store, TV station... you may not know that gray ribbons are symbolic for brain tumors but ask someone what a pink ribbon is for and most people can tell you.  I think I'll make my own ribbon with both pink and gray... maybe people will ask what it means and I can spread the word about the gray part.  

In addition to seeing things we've never seen before as we begin a new journey, we also use our past experiences as a gauge to help us interpret these new experiences.  By having that 'gray ribbon' component as a past experience, my life has actually become easier.  Even regarding my impending partial mastectomy,  having already had brain surgery feels like having a tooth cleaning after a root canal.  Please understand I'm not minimizing the difficulty this presents to me or others, just that I feel I have an advantage in handling my emotions and fears.  

Still, my brain protects me by putting me into a state of 'numbness', a feeling which is very familiar to me.  I think it is a form of emotional shock.  A way our minds protect us when there is too much to bear.  A coping mechanism, much appreciated. (no, I'm not taking any medications, I'm lucky enough to be able to do this on my own, no alcohol or drugs!)

Many years ago, a friend of mine came up to me said she had a pastor who had just had brain surgery for a tumor around the same time as me.  She arranged for us to meet thinking it would be helpful for us to talk and share our experiences.

He was a very nice man and many of our experiences had been similar.  One striking difference was that what I think of as my mind protecting me by 'numbing' the experience, this pastor described differently.  He felt that Jesus had come and held him in his arms so he would be protected and safe.

Being Buddhist and believing the mind is the way to our inner 'spirit (energy)' or true self, I suppose both of us are right from our own individual perspective.  

During my most recent mindfulness class series, I found I didn't have enough time to meditate each day so I tried something new.  I tried being mindful of each and every moment.  Feeling the support of the earth under my feet, warm water in the dishpan, the water against my back in the shower.  At first, I could do it for 15 to 20 minutes, then half an hour... with the introduction of this new crisis, I actually am finding it easier to stay mindful most of the day.  What a nice surprise that is!  My mind is enjoying just enjoying the moment.  I was even able to carry that mindfulness through the entire MRI of my brain yesterday, mindfully experiencing each click, bump and thump.  

Funny how we get what we need.  The last class of the mindfulness series will end the same day as my surgery.  The full-day silent retreat was my last day of participation and it couldn't have been timed better - the first Sunday after my diagnosis.  There's some luck for you.  See?  I do have some.

“Peace comes from within. Do not seek it without.” - Buddha

Why a blog?

When life happens to us, the only perspective we truly have is the one WE see from the inside looking out.  When I talk to people and we share our stories, it seems 99% of the time, people say to me "You really ought to write a book."  I have heard that SO many times, I decided to go for it.  But I'm starting with a blog instead.

I'm not sure where this blog will take me.  In four days, I will have surgery to remove two breast masses the doctors believe are cancerous.  What will come after that, I am not sure.  One thing I know is that I have a lot to share with those who care to hear it and maybe, just maybe, someone will benefit from what I have to say.  Oh... and it helps me to stay distracted.  :)

At the moment, I am thinking of ways to make something ugly into something beautiful.  

Maybe the ugly experience in itself will be helped by inserting some positivity, hope, determination, adjustment of perspective and mindfulness.  

Maybe those factors will turn that ugliness into something that can be inspirational and make the journey less difficult for someone else.  

Maybe, as I did with the brain tumor, I will meet people who I cannot imagine my life without.  Even those I have lost who had become like family to me (RIP Beverly, David and Kim <3 <3)  remain in my heart in a really big way.  Maybe some day I will be thankful for this experience because of all the new people it has brought into my life who I would not have known otherwise.  People like Nancy, Kim, Amanda, Carol, Bruce, Kim, Beverly, JoAnne, Anne Z., Gus, Eric, David... too many to mention.

Maybe a beautiful tattoo (can they tattoo cleavage??) over my future scar will forever remind me of how lucky I continue to be.  I have felt for 16 years that I am on borrowed time anyway.  Maybe the word lucky mixed in with a bunch of fractals would be an appropriate tattoo.

My brain tumor scar lies hidden under my hair.  It extends from just above my left ear under the hairline to down behind my left earlobe.  It is bumpy, ridged and very ugly!  I always think to myself that I could keep some spare change in those "nooks and crannies" if not for the hair covering it.  Maybe I became a little lax in taking things for granted.  Maybe I needed a reminder of how lucky I am. Having that scar exposed again after all these years if I need chemotherapy will truly bring me back to that place of ultimate appreciation for so many things... living to see my daughter graduate high school, choose a career, meet her life partner, experience having a 'son'; being able to hold my grandson and get to know him as he evolved into a beautiful little man with opinions and thoughts of his own...  I need to always remember how incredibly lucky I am to have been here for each and every one of these.  No matter what happens... I really lucked out.

All I know is that attitude was the most important tool with my brain tumor journey and I know this will be true now.  Just holding on to that thought and staying mindful and appreciative of each and every moment... that's all I have to do.  And I've been practicing that for a very long time.  That I can do.

Early in my brain tumor journey I attended a brain tumor conference in Providence, Rhode Island hosted by the Brain Tumor Society of Boston.  One of the speakers read an essay by Emily Perl Kingsley which was profound to me then as it is now. It perfectly sums up my thoughts here.  I don't have the exact text but it went something like this:

A Trip To Rome

Having    (insert appropriate situation here)     (i.e., a brain tumor, breast cancer, a child with autism, etc.) is like planning all your life for a trip to Rome. For years you prepare by learning the language, researching what you want to see when you get there, scheduling tours, getting maps, etc.  Finally, after so much anticipation, the day arrives.  You get on the plane, find your seat, sit through a long flight and the plane lands.  You come down the ramp off the plane and the flight attendant says "Welcome to Holland!!"

"Holland!!!????" you say.  "What do you mean?  I'm going to Rome.  I have plans.  I learned Italian.  I have things I want to see!"   "Well", says the flight attendant, "You are in Holland.  And this is where you will have to stay."

All your friends and relatives call and write and tell you all about how much fun they are having in Rome.  They send pictures and ask when you are coming. You are so disappointed as you wanted so badly to go there.

After some time in Holland, you stop to think.  They have tulips here, windmills, Rembrandts... it's not like you've been dropped into an impoverished third world country or the middle of a war zone.  You have to make a choice.

Either you sit and pout about the fact that you wanted to go to Rome and ended up here instead or you stop and look around.  You think about all the people you are meeting here and the new things you will experience that you had not exactly expected.

**********

The choice is ours.

Introduction to The Perils of Patti

Life has been exciting since I was about 12 years old.  Old-fashioned, Italian father who was also a marine... that kind of gives you an idea of the "atmosphere".  But as far as my health journeys, it wasn't until high school that my problems started.

Most of my senior year of high school was spent in the hospital.  All kinds of tests, no one able to find out why I would just faint with no warning or apparent reason.

By the time I started working, new symptoms were popping up.  Hives on my hands, feet, lips, eyes, tongue, throat.    But these weren't normal type hives, they were what is called "giant urticaria".  It was as though someone infused liquid into my soft tissue until it looked like it would pop.  Most doctors just felt I must be allergic to something.  Some said it was 'all in my head." Unfortunately, the latter was correct.  But not the way they had intended it. Those hives continued for the next 25 years, two to five times per week.  They stopped on May 3, 1999.  The day my brain tumor was removed.  My body had been trying to reject that darned thing the whole time it was growing in my head.  

But, I digress...

In the early 1970's, I was lucky enough to be working at Children's Hospital Medical Center in an Adolescent Medicine Unit.  All the doctors working there were affiliated with Harvard Medical School and the programs at that hospital were also affiliated.  So, as a medical secretary, I was typing summaries and letters for some of the most brilliant people in medicine.  I learned so much doing this, it was truly an amazing experience.

One of those men, Dr. Norman Spack, became a very important person in my life.  With no connection to my father, he kind of took me under his wing and watched out for me.  He lent me advise about all kinds of things.  I became very close to his family and spent time with him both at work and out of work (babysitting for his children, lunches, side projects, etc.)  As I walked along the sidewalk near the medical school with him one day, we were talking about the different things happening in my life.  I had run away several years earlier and was struggling to support myself and figure out what I wanted to do.  In particular, we were discussing my strange symptoms.  I'll never forget as we pondered what could be happening, my left heel (a high heel) just came off!  As I limped along in amazement at what had happened, we both laughed.  He said to me, "You know, you really should write a book.  And you should call it something like "The Perils Of Patti". (which was the name I went by at the time.)

So in honor of Dr. Spack, I have titled my blog "The Perils of Patti."