Sunday, January 30, 2011

Getting On My Nerves

So I've been having a little bit of a rough time.  Friday night, out of nowhere, I get this very sharp stabbing pain in my ear - in my good ear.  It lasted 5 hours and then just as suddenly as it came on it went away.  But those 5 hours felt like an eternity.  The pain medication managed to take away all the pain I was feeling except for the ear pain.  I even took a full dose instead of my usual half dose in the hopes that it would knock me out; but no such luck.  There was nothing to do other than try to stay calm and ride it out.
Saturday was much better but I had an overall feeling of fatigue and a little bit of nausea.  My pain symptoms have increased lately especially to the right side of my face and my jaw.  It's difficult for me to open my mouth or chew due to the jaw pain.  Then there's the increased throat pain. It's worse in the mornings for some reason even making it difficult to drink water.  Also, my face must have swollen a bit - although it doesn't seem to be noticeable.  But my radiation face mask has gotten so tight that it leaves marks on my face.  My radiation team is going to adjust if for me on Monday.
All of this is to be expected.  The doctor told me this is all nerve pain and perfectly normal since the tumor is all over my cranial nerves and it's rebelling against the radiation by swelling up.  So figuratively and literally speaking this tumor of mine is getting on my nerves!  It stinks.  It's no fun at all.  But I'm alive and considering everything, I'm doing quite well. 
I'm feeling better today and the plan is to make the most of my day.  The doctor warned me that it would have to get worse before it gets better.  But he also said that the first two weeks would be the easiest.  Well I'm a week and a half in.  So I'm bracing myself for whatever is to come.  And I know that this will pass.  Everything always passes.  I tell my friends when they are struggling through something that in (insert a number of years - depending how big it is) they won't be suffering through this anymore.  The same is true for me.  One day this will be a memory and it will serve to remind me, my family, my children, and my grandchildren that they too can overcome the challenges in their life.

Thursday, January 27, 2011

A Familiar Smile

Every Friday, while I'm doing my radiation treatment, I have to get my blood drawn to make sure my platelet levels are ok.  If they aren't, I just have to stop my treatment for a few days and wait for the levels to return to normal.  Last Friday was my first blood drawing session.  I went to the Lab Corp on the UM campus.  When I walked in, I noticed that one of the nurses looked familiar.  It turned out that she was the nurse who was going to be drawing my blood.  After we got in the room, I said to her, "I know you from somewhere."  It turns out that she also works at an OBGYN office and I used to visit that office when I was a pharmaceutical rep.  We caught up and made some small talk and then she asked me about "my situation." After I explained it all to her she says, "Now I know why I am here today."   She went on to explain that she never works at this Lab Corp but she had been asked to cover for someone.   Apparently she wasn't too happy that she had been moved around but my running into her had her day take on a whole new meaning for her.  She spoke with me and my mom for a while and told us how we would be in her thoughts and in her prayers.  When I asked her where she normally works, she told me she's usually in Miami Beach.  I said, "What a coincidence, that's where I live."  She asked me to please come by any Friday that I needed and she would be happy to see me and draw my blood for me. 
It was not only so nice to see a familiar face - especially to do my least favorite thing - draw blood.  It was so nice that I could alter the meaning of her day for her.  It's an incredible thing how we human beings add meaning to our lives and how that meaning has the capacity to alter our whole state of being.  I gave meaning to our having met at the Lab Corp too.  For me, she was sent there that day so we could cross paths.  And the fact that she works on Fridays just blocks from my home is wonderful!  Now, not only do I get to see a friendly and familiar smile when I go draw my blood, I also know it won't be so bad.  She did an excellent job.  I didn't even feel a pinch!  So tomorrow, I'll be a little more calm about drawing my blood and looking forward to catching up with her again!

Tuesday, January 25, 2011

Hello, I Have A Brain Tumor

After I saw Dr. No Bedside Manner I had an appointment at my school with the program director to register for the next semester.  He was running a bit behind and I was highly anxious.  I had booked the appointment 20 minutes before I was scheduled to take an exam for the most difficult class I was taking.  When I made the appointment, I had no idea what that day would have in store for me.  I had even waited an extra day to get the results of the MRI from the ENT because I wanted to be able to study for this test without anything interfering.  I had reviewed the images myself and although I did not know how to interpret them, I knew something didn't look right. 
About 10 minutes before my test was scheduled to begin, I was called in to the program director's office.  He greets me with a smile and says, "How are you?"  It was the first time someone had said those words to me since I had been told I had an inoperable brain tumor and it was a possibility that I would live with my current symptoms for life.  I wanted to answer something like, "I'm incredibly anxious because you're running late, I have a huge test, and oh yeah, I have a really large brain tumor."  But I was pretty sure he meant the question rhetorically so I replied, "I'm great.  How are you?"  I was out of there in 5 minutes and arrived to take my test just on time.
I took that test in slow motion.  I had no idea I was in slow motion but I found out when the professor said, "time's up."  I was in shock.  Where had the two and a half hours gone?  I turned in my test and said, "I didn't get to finish."  The professor very nicely said, "You'll just have to be graded on the work you did."  I wanted to cry.  I managed to leave the building and cry in my car.  It wasn't that I didn't know the material.  I more than knew the material.  I just couldn't concentrate enough to produce the kind of work that I would normally produce.  As it turned out, I did very well on the exam (but I could have done even better).
For quite some time, I have been what I call sensitive to the human condition.  I am in tune and empathetic to others feelings and I try to be responsible for the role I play in affecting others emotions.  But I have my moments.  You know those moments when people are just testing your patience.  When it seems like their goal for the day is just to make your life a little more difficult.  This changed the day I saw Dr. No Bedside Manner.  Now I have an even grater awareness of the fact that I have no idea what challenges people I encounter may be going through.  No one would ever meet me and think there's a girl with a brain tumor.  We don't wear labels stating the challenges we face.  This insight has taught me to be more patient and kinder with others - even when they aren't behaving the way I think is best.  What I believe about the human condition is that we all just want our lives to work out as best they can along with the lives of all of those we care about.  When someone isn't putting thier best foot forward, who knows what lies under the surface, what challenges and obstacles life has handed to them that they are battling with. 
As I was sharing this with a friend who felt slighted by the way someone had behaved with her she asked, "What if they're just a jerk."  I agreed that it was definitely a possibility but the other side of the coin was just as likely.  We usually get a small snap shot of others and we make judgements  about them based on a one time interaction.  What if I had been judged someone who just can't finish an exam based on the one incident? I told my friend that the truth is we can't control how other's will behave but we do always have a choice in who we "be" in the matter.  I choose to be more patient, more gracious, and kinder because I bet that even if we did wear labels that stated our challenges, very few people's would read...Hello, I'm just a jerk.

Sunday, January 23, 2011

How To Comment On This Blog

Hello friends.  I have been getting many wonderful emails and facebook messages from so many of you.  I am so appreciative for all of your thoughts, prayers, support, and kind words.  I truly feel the love!  I have also been hearing that some of you aren't sure how to post messages on the blog so this blog is for anyone who has had this frustration.

First look on the top right hand corner of the blog and find where it says Sign In.
Click on that.
Next it will take you to a page that asks you to type in your email address. 

IF YOU HAVE A GMAIL ADDRESS: type it in there and your password.  Next you will be taken to a page that you can use to set up a blog.
In the middle of the page in orange it says New! Add Blogs to your reading list.
Click Add and type in
It will give you the choice to follow anonymously or to follow publicly.  Select the one that you would like.
Then the blog will be loaded on the right. 
Click on a title to the right.
Now you will be able to post on the blog.

IF YOU HAVE ANY OTHER EMAIL ADDRESS:  look on the bottom where it says, "Don't have a google account"  and click on Get Started (in blue)
Type in your email account.  Choose the password you would like to use to sign in (it does not have to be the same password that corresponds to that email account).
Fill in all required information and when finished click the orange arrow that says continue.
Next you will be taken to a page that you can use to set up a blog.
In the middle of the page in orange it says New! Add Blogs to your reading list.
Click Add and type in
It will give you the choice to follow anonymously or to follow publicly.  Select the one that you would like.
Then the blog will be loaded on the right. 
Click on a title to the right.
Now you will be able to post on the blog.

Anytime that you go to the blog and you want to leave a comment, just make sure to click sign in on the upper right hand corner.  Type in your email address and the password that you selected and you'll be able to leave a comment.

I hope this helps.  Please let me know if you encounter any hiccups.  Thank you again for all your amazing support!

Saturday, January 22, 2011

Radiation Magic

Radiation is a little like Disney World.  My first radiation session was on Wednesday.  I walked into Sylvester and the two people who were going to be doing my radiation greeted me.  They're as nice as can be and they explained to me how everything would work.  Then we walked into the room where if everything goes as planned, "dreams come true."  It's a fairly large room, with a large machine in the center of it.  The machine is completely open (not like an enclosed MRI) and it moves all around me but it does not touch me at all.  When I lay on the table, I'm covered with a blanket to make sure I don't get too cold.  They give me a donut shaped pillow to hold for comfort and make sure the pillow on my head feels comfortable as well.  I'm looking straight up to the ceiling.  The ceiling has a large circular cut out that is lit with a beautiful blue color and has fiber optic lights simulating the stars.  It's very relaxing and beautiful.  Music is also playing in the background and they joke with me that they promise to get better music for future sessions.  The music that was playing was Disney show tunes - think fantasia.  I thought it was great.  It really helped to set the mood.  Next my mask is put on.  The mask covers my entire face and shoulders and has cut outs for my eyes, nose and mouth.  The mask is strapped down to the table and is used so that I don't move my head or neck during the treatment at all.  Luckily I'm not claustrophobic!  When we are ready for the radiation to begin, I am left alone in the room.  The rooms has cameras and audio equipment in case I feel uncomfortable for any reason the radiation can be stopped and restarted once everything is ok.
During the radiation, I don't feel, taste, or smell anything out of the ordinary.  I lay looking at the stars, listening to music, and occasionally I see green and red lasers.  All the while I'm envisioning my tumor shrinking.  When the machine moves right above me, I can see my reflection.  I look funny with my mask on but I pretend it's my suit of armor.  The whole thing is over in 15 minutes.  It's so relaxing that I almost don't want to leave.  They really do everything possible to make it as pleasant of an experience as they can.
I'm scheduled to have radiation five days a week for the next 5 weeks.  So far, I've had 3 sessions.  I've experienced some side-effects due to the tumor swelling a little bit.  My doctor informed me that this is normal and to be expected.  I've been told that by next week I'll feel like my face and neck got a sun tan and in the following weeks it will feel like a sunburn.  I really have to be careful with sun exposure because my skin is extra sensitive to the effects of the sun right now.  I haven't lost any of my hair yet, but I've been told that I will start to notice it in the coming weeks.  I haven't really noticed any fatigue yet and I've had very little nausea.  Overall - so far so good.
Radiation treatment really is like magic.  Yes, the side effects may not be pleasant and it is possible that I'm in for some challenging times ahead; but if my tumor stops growing or God willing even manages to shrink, I'll always think of that room where my treatment was done as, "the happiest place on earth!" 

Thursday, January 20, 2011

Unexpected Angel

This morning I was determined to be productive.  I made my to-do list and began to scratch things off.  Then I hit the part that said pay and discuss medical bills.  By ‘pay and discuss’ I meant work out a payment plan and find out why the insurance didn’t cover a portion of the bill.  This was probably my least favorite thing on my to-do list.  Medical bills and insurance issues are daunting and usually exhausting.  But I took a deep breath and made the call.  I was transferred a couple of times, and finally reached the person who could help me.  She said to me, “Oh, your name sounds familiar.”  I figured maybe she had just seen it in her files at the office.  After we spoke for a little bit we realized that we went to high school together.  It’s always nice to feel like you have a connection with someone when you’re trying to figure out a bill.  Then I told her I wanted to pay an installment and she said ok and then put me on hold.  When she came back on the phone, she told me that she would take this installment but the rest of the bill would be written off.   I wish I could have gone through the phone to give her a hug!  I thanked her (I think maybe about 10 times) and she said, “You’re so welcome, I can only imagine what you’re going through.”  I got off the phone so excited that I wanted to call everyone I know and tell them about my unexpected angel.  I have no idea if my old high school classmate ever comes across this blog.  But if you do, I want you to know that your random act of kindness totally made my day!  If we ever run into each other expect a great big hug from me!  I went to radiation and spent the rest of my day with an extra hop in my step and a grateful heart thanks to you – my unexpected angel for the day!

Wednesday, January 19, 2011

Gratitude Found at the Emergency Room

Monday morning I awoke with chest pains.  By Tuesday morning I was worried when it hadn't gone away.  After speaking with my doctor's office and being advised to go to the ER, I called my parents and Nate and we head to the emergency room at UM.  We had decided to go there since UM has all of my medical records.  Given that my radiation was scheduled to start today, we really wanted whoever treated me to be aware of my condition.  The scene at the emergency room looked like something out of a movie.  To say that it was very crowded and chaotic would be an understatement.  There was a woman yelling profanities in a corner because she was upset that a man in a wheel chair was blocking her view of the television.  There were people being taken in by fire rescue on stretchers and then dropped off in the waiting room onto a chair.  Then there was a little old lady that caught our attention.  She was crying because she had been there since 9am, all by herself, and although she had been seen by someone, her condition was not alleviated and she was not spoken to by any of the hospital staff.  It was 6:30 pm.  The hospital staff was not to blame.  They had their hands more than full and it was simply impossible to accomomdate all the patients that were in need of care.  As I was getting an EKG, my father and step-mother were trying to get the lady some medical care while listening to her story.  She told them how she was all alone in this world.  She has a daughter that lives in Cuba but they had lost touch.  She was lucky enough to get to an emergency room because a neighbor called the rescue for her.  Besides the fact that her legs were extremely swollen and she was in pain; she was afraid and she had no idea what was going on.  What she needed more than anything was someone to hold her hand and tell her that all was going to be well.  Unfortunately, we realized that we had to leave this emergency room because it would be many hours before I received any sort of attention.  But that little old lady stayed in mine and my family's thoughts all night.
When you are born into a family like mine, it's easy to take for granted how incredibly supportive they are.  When I called my parents to tell them that I was going to the emergency room, they dropped everything they were doing to meet me there.  They have younger children, another daughter that has a newborn with a fever, a mother with pain in her legs, a gym class to go to, a child's baseball game to attend, etc.  I know that they aren't sitting around waiting for me to call.  What's even more amazing to me is that I wasn't calling them to give them an update of my situation.  I was calling them, because I knew that they would want to meet me in the emergency room.  It's not that I mean to take them for granted, it's just that this is the way my family operates. 
As I was on my way to the emergency room at Mercy hospital my dad was telling me, "Listen you have chest pains; maybe you want to act like you actually don't feel so good so they give you attention quickly.  This is not the time to put on your brave face."  He made me laugh, but he was right.  Again I thought about the little old lady and wondered how differently her day at the ER would have been if she had someone like my dad by her side.  Then I thought of her again, while my blood was being drawn and Ili (my step-mother) and Nate had stepped out of the room and my dad knew my hand needed some holding.  Would the little old lady have been so scared and crying if she had someone to just hold her hand?
While I was at the hospital my mom, grandmother, siblings, aunts, uncle, and friends kept calling, texting, and even facebooking to see how I was doing.  Ili kept giving me updates on who was requesting updates and sending their well-wishes.  If I could have taken that little old lady with me, and shared some of my support with her I would have.  My parents were even thinking of going back to the ER at UM to drive her home if she needed! 
By 3am, my blood had been drawn, an X-ray and a CAT scan had been administered, and a blood clot in my lungs had been ruled out.  I was told that I probably have an infammation of the tissue surrounding the lungs; a condition that should get better within a week to 10 days.  I was given a pain killer and sent home.  As we left the hospital I again thought of that little old lady and my heart was filled with a sense of gratitude for the incredible people that are always by my side, always cheering me on, always pushing me to be stronger and better.
Thank you family for the late night.  Thank you for rushing to be by my side and holding my hand.  Thank you for calling to check up on me and worrying the way you do.  Thank you for making me laugh even when I'm in pain.  Thank you for the endless support, the long hours spent on google, and the comfort that your love brings! I love you!

Monday, January 17, 2011

Paging Dr. No Bedside Manner

The doctor that first diagnosed my tumor is an ENT (ear nose and throat doctor).  He was very nice and apologetic that he could not help me more since obviously tumors in the head were not his specialty.  He suggested I find a neurosurgeon right away.  Once I informed my family, my step-mother (which is part superhero) went to work calling every doctor she knew for suggestions and eventually every neurosurgeon's office she could find.  Eventually a neurosurgeon himself picked up the phone.  She explained to him the situation and he was kind enough to say that he had a cancellation for the next day and he could fit me in.  Imagine our relief!
I arrive with my mother and my father to the consultation.  The doctor walks into the consult like if he'd been having a very long day.  It was 10:00 in the morning but I thought the poor doctor was probably just a little tired.  We ask him if he wants to take the film or the CDs to view them before he speaks with us.  He says that won't be necessary and he proceeds to pull out the films and examine them.  As he's viewing them I tell him that I have a lot of pain in my neck.  He says, "your neck is perfectly fine you have nothing there."  (We now know the tumor extends pretty far down my neck.)  I then inform him that I have something in my ear.  The ENT had become alarmed when he took a look in my right ear.  The doctor then looks into my right ear and say, "Oh, I have no idea what that is.  I've never seen anything like that before."  He then continues flipping through the MRI films and sees on the film whatever it was he was looking at in my ear and says, "Hmmm, that's probably something completely unrelated."  (We now know that the tumor extends out into the middle ear, and it is very much related - it's all one large tumor). Then he stops on one of the slides and says, "Oh, it's huge, yeah you're really lucky that your eyeballs aren't popping out by now."  Upon seeing another slide he says, "No, there's not a surgeon in the world that can take this whole thing out and if they tell you they can, they're lying." (He was right about that).  Then he continues, "But, we could take out part of it, I'd have to cut your face though, the scars would be pretty bad."  Just as I'm thinking that this doctor couldn't possibly have such terrible bedside manner, he says, "Do you have any plans for the upcoming year?"  When I tell him I'm getting married, he says, "Oh yeah, no you would look horrible, we definitely can't do a surgery."  By now I'm wondering where the hidden camera is located.  My parents were in such shock that I think their mouths might have actually been open. 
Then he tells us that I might be a candidate for cyber knife.  Cyber knife is a wonderful relatively new treatment for small tumors.  It sends a very targeted beam of radiation to the center of the tumor causing little or no damage to any surrounding tissue.  Only three sessions are needed and there are no side effects.  After everything the doctor had just told us, we were elated to hear that the solution could be so simple.  The doctor then had one of his colleages which works at cyber knife come over to take a look at me and my films.  He agrees that we should proceed with the cyber knife treatment. 
Once the cyber knife doctor leaves we ask the neurosurgeon if he would like a copy of the MRI films.  True to his style of consult thus far, he pulls out his iphone and says that he's just going to take a picture of two of the films and that was good enough for him.
We leave not really knowing what to make of the situation.  I was just happy that I got in front of a neurosurgeon.  It seemed there was a plan in place that would involve no pain, no side effects, no nothing.  I was going to lay on a table for 1 hour three times and I was going to be all better.  Sounded like a plan to me.  My dad on the other hand was like, "I don't know, I didn't really feel comfortable with this doctor."  He pointed out that most doctors would take the time to review the films privately.  This doctor literally was thinking out loud in front of his patients with zero consideration for how what he was saying was going to sit with them.  I couldn't help but agree with my dad. When I replay that consult in my head, I find it hillarious.  This poor doctor obviously missed the bed side manner day at medical school.  I don't think he realizes how his "style" might affect some of his patients.  To be fair, this was the very first neurosurgeon on the case.  The neurosurgeons that followed had the benefit of multiple doctors eyes and their oppinions.  My original report from the MRI that the ENT had ordered was a misdiagnosis.  It said I had a meningioma that was 3 cm (a small benign tumor).  Meningiomas are tumors that people often live with their whole lives and they don't always require any sort of intervention - surgical or otherwise. 
Now we know that I don't have a meningioma and that unfortunately the appropriate treatment was not cyber knife.  Everyone's heard that second (and maybe thrid, fourth and fifth) oppinions are very important.  In my case, that couldn't be more true.  But I'll never forget the first neurosurgeon I saw.  I now affectionately refer to him as Dr. No Bedside Manner.  At the very least, he provides comic relief to a pretty tense story.

Saturday, January 15, 2011

A Kick In The Ass

Nate and I had decided that we would go out on Friday night.  The plan was to try out a new happy hour in Downtown and then head to our favorite restaurant - Houstons (now re-named Hillstone).  We invited some of our friends, but we weren't sure any of them were going to be able to make it.  Either way we were going to get out, forget about pain and illness, converse about our week and anything else that was on our mind, and most importantly laugh together.
We were thrilled when a couple that is very good friends of ours said they wanted to join us at Houstons. The girl friend part of this couple also suffers from a great deal of chronic pain.  She asked me last night how I manage to go out even when I don't feel so well.  I explained to her that it would have been easier for me to stay in.  After all we could have rented a movie and talked and laughed all we wanted to right at home.  I could have even saved myself the trouble of getting ready and stayed in my pajamas.  But that's just the thing.  Nate had been dealing with frumpy pajama girl all week.  He loves me even when I'm acting like an insoportable viejita en mis pijamas.  But it's nice to remind him (and more importantly me) that I'm still the fun sexy girl that he fell in love with.  So I put on a nice dress, blow dried my hair, and did my make-up just like the best make-up artist I know taught me.  When I was done a funny thing happened, I started feeling better.  When Nate saw me and told me how great I looked, my pain lessened even more.  My awareness of the pain continued to decrease and by the time our friends joined us at Houstons I had no awareness of my pain.  I don't mean to pretend that the pain disappears.  But pain can only affect you when you are aware of it.  If your focus is elsewhere you simply don't notice it.  As the night continued, we did a great deal of laughing and a funny thing happened.  My girl friend noticed that she didn't feel her pain anymore either.
What I've learned is that even when you have an illness or pain, life goes on.  You can either find a way to be part of life, or miss out on some potentially pretty great moments.  The key for me is to just mentally prepare to get myself ready to go out the door.  I think of it as giving myself my very own kick in the ass.  I'll wake up in the morning and think oh today I promised I was going to do (insert activity).   Next I have a little discussion with myself that goes something like this: 
"Oh maybe I can get out of it, people will understand.  No Maria, you're going to go out, be part of life, and you're going to freaking enjoy it!  So when it's time, go and get ready and then go have some fun.  Yes, I know, forced fun, poor you." 
If you were wondering how to properly kick yourself in the ass when life is giving you an opportunity to relish in the experience of being fully alive - that's how it's done my friends.  And you know what, I've never looked back on times spent in the company of others, enjoying my aliveness, and thought...I wish I had stayed home in my pajamas.

Thursday, January 13, 2011

The Love of Sisters

When I'm asked about what I'm going through I always make sure to mention that there have also been many blessings that have come from this ordeal.  Of course I would prefer that I had received these blessings through some other means, but this just happens to be the package that they were delivered in.  So there is nothing to do but to be aware when one of them is presented, and then graciously accept.  Today I received a blessing from one of my sisters.
Growing up I used to wish I was an only child.  God answered my prayers with four siblings! Now I couldn't imagine my life without them.  We are a very close family, but there is something about the bond that sisters share that is extra special.  I have two amazing younger sisters.  Today, the sister closest to me in age called me after her doctor's appointment.  She recently had her third baby and she has been thinking for a while that this would be her last child.  When the doctor asked her if she wanted to go through with that decision, she informed her that she wasn't sure yet.  She wanted to leave her options open just in case her sister (me) wouldn't be able to carry a baby; she wanted to be able to do that for her.
She called me very excited to tell me that even if I have some fertility issues due to the radiation that my pituitary gland will receive, it will not affect my ability to carry children.  I was confused about this because the doctors had suggested that I might want to look into freezing some of my eggs.  It's a relief to know that this isn't necessary.  But more than anything I was so moved that my sister was actually willing to go through pregnancy and child birth on my behalf.  Talk about an incredible gift!  We had discussed this a while ago, and she had told me that she would carry a baby for either of her two sisters.  I was happy with just the thought that she would do something so wonderful for me.  But today, thanks to my condition, my sister's love and generosity was witnessed by me on a level that I would have not gotten to see if it weren't for what I was going through. 
I thank you sister for being the remarkable woman that you are!  Thank you for the nights you let me crawl into your bed when I was afraid, and for still protecting me from anything that might scare me.  Thank you for being an example of courage and strength to our whole family.  Thank you for your giving nature and your beautiful heart. Thank you for the gift of today's blessing!  I love you!

Wednesday, January 12, 2011

Eating For Healing

I've always been a pretty healthy eater.  I go through phases where I'll be very strict with my diet and other phases where I'm more relaxed.  But the truth is that until now I've never eaten for my health.  When I said I was watching what I ate, I meant I was ensuring that I fit into a size 2.  It just happened to be that the foods I selected were pretty healthy, and that my palette is not particularly picky.  I've also never been one for skipping meals or starving so my diet for many years has consisted of 5-6 small meals a day.  I've never really cared whether I was getting all my vitamins and minerals or if I was eating enough fruits or vegetables.  At the end of the day all that mattered to me was knowing exactly how many calories I had consumed.  Well all of that has changed.
My nutrition priorities shifted the minute I was diagnosed.  I wanted to do everything in my power to help my body create a healing environment.  A friend of mine sent me a book by Dr. David Servan-Schreiber, titled Anti Cancer A New Way Of Life.  The book is written by a man with both an MD and a PhD that had a malignant tumor in his brain.  He took advantage of his resources and did massive amounts of research on the link between cancer and helping it heal with food and the mind-body connection.  He puts all of this research in his book.  His cancer has been in remission for ten years.  I also read up on the China Study.  This was a 20-year research project conducted by Cornell University, Oxford University, and the Chinese Academy of Preventive Medicine.  The findings showed that people who ate the most animal-based foods got the most chronic disease.  People who ate the most plant-based foods were the healthiest and tended to avoid chronic disease.  I combined what I learned from the book and the China study and for the first time in my life I began eating for health.  My diet still consists of 5-6 meals a day but is mostly made up of fruits, vegetables, nuts, beans, and whole grains and it rarely has any animal based products. 
Truthfully this hasn't been terribly difficult for me but it has required a change of mind set.  The best food for "the size 2 diet" is egg whites.  You don't get much more low calorie, no carb, and high protein than the egg white.  I bid the egg white adios and haven't looked back.  I used to shy away from fruits.  Not because I didn't like them, but because I associated them with sugar.  Now I start my day with a 100% fruit drink (I use a juicer and mix in frozen fruit with a blender) that contains apples, oranges, blackberries, strawberries, blue berries, and raspberries.  I had no idea why people spent more money to buy organic anything.  Now organic is my friend.  Almost all of my fruits and vegetables are organic. I also gave up my favorite snack - smart pop pop corn.  It contains an oil that I should stay away from.  Lean Cuisines were my go to staple when I was in a hurry.  When you're tyring to heal, that has to take priority over being in a hurry.  I just plan a little more time in my day now - and if I'm late, I roll with the punches.
I've had a couple people ask me what my food intake looks like for the day now.  So here's an example - I'll use what I ate today.  I started the day with my fruit "smoothie."  Next meal was a slice of whole grain bread with organic hummus and a small bowl of edamame.  The next meal was some Jasmine rice and black beans.  Then I had a handful of almonds and walnuts with some dry whole grain cereal for a snack.  The last meal (which I have yet to eat) will be vegetables (red pepper, carrots, broccoli, asparagus, garlic, onion, and ginger) cooked in a wok with some olive oil with a mix of leafy greens.  It all tastes great. 
I was also taking green tea, fish oil, and a super food supplement.  I have stopped taking all of these because my doctor asked me to stop while we were doing the radiation.  These supplements, although very good for you, are anti-oxidants.  During radiation you need an oxygen rich environment for the radiation to be effective.  Once it's over, I can go back to taking the supplements.
Also I should mention that while I eat this way most of the time, I still go to restaurants and grandmas house and enjoy my food.  I am staying away from animal products but Abuela's arroz con frijoles and platanitos are just not something I can go without indefinitely.  Allowing myself to have a little splurge every once in a while makes it much easier to stick to a healthy eating plan.
If you're wondering about my size, it hasn't changed one bit and I don't expect that it will.  But if it did, I'd be more than willing to accept that if it meant that my body was healthier and a better environment for healing. My defenition of healthy has been tweaked and I've learned a valuable lesson - even in South Beach, where the average size is a negative 1, who cares how faulous you look if your body is not as healthy as it can be!

Tuesday, January 11, 2011

The Gazing Healer

Last night, as Nate was reading the Miami Herald online, he came across a headline that read "A 'healer's' stare-way to heaven?"  The article was about a man from Croatia that goes by the name of Braco and spreads healing and enlightenment through gazing at an audience for 5-8 minutes.  He's been doing this for 15 years in Europe and in the last year he has been making appearances at cities across the U.S.  He was going to be sharing his gift at the Miami Beach Convention Center and for the price of $8.00 you could be a part of this healing starring contest.  Braco claims that he does not profit from his abilities and that the $8.00 a head are to pay for his travel and the cost of renting out the space.
Nate and I decided to give it a shot.  Afterall, Braco was going to be in the corner of our home and the price was certainly right.  I'm not going to lie, I'm a pretty big skeptic. But I'm also willing to give most things a try if there's any chance at all that they will hlep me heal. So at 1pm today Nate and I went to be gazed at.
Most of the session consists of a woman talking about Braco's gift and the things that she has witnessed come from it.  The audience stands when Braco enters the room and the silent gazing begins.  We were asked to focus on whatever it is that we went there for.  I was open to the experience and was very focused on my intention.  During the session an interesting thing happened.  A white like fog seemed to surround Braco.  I could see him perfectly but all around the room this fog appeared.  I couldn't even make out the colors of the walls.  I blinked my eyes and wondered how in the world this was happening.  Were my eyes playing tricks on me? When Braco left the stage, everything was crystal clear once more.
I was eager to see if Nate had the same vision.  Amazingly he recounted exactly the same phenomenon. Of course, my skepticism kicked in.  I noticed that Braco has a marked place on the stage where he stands.  He also wore a white shirt.  Maybe there was something about the color of his shirt and the exact place in the room where he stood that caused this fog like vision.
We decided to go back a second time to get a little more of that healing gaze and to see if we experienced the same phenomenon twice.  Sure enough we both did.  Nate came out of it saying that he had an even stronger experience the second time around.  I came out a little more skeptical.  I noticed that only Braco stands in the spot that he does and there are two additional lights that only shine on the particular spot that he stands.  The mixture of the lights and his white shirt along with the fact that you're starring at him could be responsible for the fog like effect.  On the other hand, maybe that's not the explanation at all and we were witnessing something that is beyond a scientific explanation.  Interestingly we spoke to other audience members that did not have the same fog like vision that Nate and I did.
Is it possible that Braco has a special gift that is transmitted through his gaze?  Yes I believe it is certainly a possiblity.  One thing I can say for sure is that there was a sense of peace in the room.  Something did appear to be taking place and I can't put into words exactly what that was.  During both gazing sessions I thanked God for Braco.  If he is the real deal, it must take an immense amount of courage to share your gift with the world.  For every 1 million people that say you have helped them, there will be 2 million that call you a fraud. 
I personally have not experienced feeling any differently than I did before I saw Braco but if in the coming weeks I notice a change, I'll be sure to report it.  I'm certainly open to the possibility that I will experience some healing as a result of todays events.  I can also say that I feel seeing Braco was worthwhile and I would recommend it to skeptics and believers alike.
If you are curious about Braco you can learn more about him on his website  He will be gazing at audiences in Ft. Lauderdale next month.  Oh, and according to the lady that spoke most of the time (Braco doesn't say a word) you can receive his healing gift through youtube videos of his gazing sessions - completely free of charge.  Happy gazing my friends!

Monday, January 10, 2011

Learning To Roll With The Punches

There are always silver linings, we just have to be able to spot them.
I'm an easy going planner.  I'm usually as flexible as they come until there's an agreed upon plan.  Once there's a plan in place I lose all flexibility.  I don't think I've been this way my whole life but I've found that in my adult life, my ability to plan is one of my strong-suits.  It gets me by in life and contributes to my success.  But like all strong-suits, there's another side to the coin.  This planning strong suit of mine is born out of the fear that I won't be as prepared as I should be when I need to be.  I've been able to see for quite some time how ridiculous that fear is and how beneficial it would be to keep the strong suit but to get rid of the fear of not being prepared and the stress that comes with it.
I've been told (by Nate) that I should "learn to roll with the punches."  I remember the first time he pointed this out to me.  It was a weekend and I was studying for an upcoming test when he informed me that our social outing had been moved up.  This was cause for an instant freak-out.  The change of time either meant that I had less time to study so I could go get ready or that I could study and not have enough time to get ready.  What was a girl to do?  This girl panicked.  Thinking back now it's comical but at the time my plan was being messed with and I wasn't coping too well with that.  After talking with Nate I had a huge epiphany; I was HORRIBLE at rolling with the punches and I wanted that to change.  It didn't.  Every time he reminded me that I was creating the possibility of being someone that rolled with the punches, I felt more like punching him that rolling with anything.
So go figure I go and find out I have a tumor in my head AFTER I have several plans in place for the next couple of years.  For starters the only break I was "planning" to take from my doctoral program was to have a baby.  After all I had made great friends at school and my study group was solid.  Nothing was going to derail that plan.  Baby making was also supposed to start right after the wedding.  I even had planned out that we would start after the honeymoon not to risk being at a wine tasting while pregnant.  Then of course there's things I hadn't planned for yet, but a wrench has been thrown into any sort of plan I would have made.  For example, I had no idea what hair style I was going to have for my wedding cruise weekend but a wig was definitely not one of the options.  Then there are the day to day plans.  The to-do lists that must get done - or else! Or else what?  Or else I'll fail and I won't be prepared and probably the world will fall apart.
But you know what I realized after my diagnosis, the world has never fallen apart (not even close) because my plan got derailed.  It's ok that I'm taking a semester off or that I'll have to wait a year to have a baby, or even that I'll be wearing a wig on an island in the hottest month of the year.  It's a misconception that we have any real control over our lives.  Plans change in an instant ...whether you had that in your to-do list or not.
One of the things that happens to you when you find out that something is going on with your health is that you gain a new perspective.  Suddenly certain things you thought were crucial don't seem so important any more.  It's quite a gift really.  The important things shine brighter and you're able to focus on them and be present to the wonderful blessings in your life.  The unimportant things (those that usually cause the most stress) become dull almost like background noise.  Life has forced me to learn to roll with the punches.  Good thing too - because that was totally part of the plan (kidding)! I've been noticing this difference in me for quite some time and hence there's the silver lining.  I had been wanting to create myself as someone who could roll with the punches.  Turns out the big guy upstairs must have known it was going to take something drastic.  I'm present and grateful for the silver lining.
This morning I had planned to start working at 9am.  I had some pain that didn't allow me to concentrate until 11am.  Normally this would have been a cause for stress.  Instead I slept a little longer, meditated for a half hour, watched Dr. Oz, and then worked until a little later than planned..  No stress required.  It turned out to be a productive day...punches and all!

Sunday, January 9, 2011

Friends, Wedding Bells, and Babies

It's been one of those really great weekends.  The kind that we used to have before all my symptoms.  It was almost like a tiny vacation from pain and symptoms.  That's the funny thing about pain.  It's not constant and it's not predictable.  So when a break coincides with a weekend you just gotta thank God, believe that it will last, and ride the wave.
We kicked it off Friday evening by meeting some friends in the Gables.  The weather was chilly, the food was delicious, and the company was fabulous.
Saturday we spent the day at our friends garden wedding.  There's something about being in the company of so many friends while celebrating love that makes the day feel magical.  The ceremony and reception were beyond beautiful. We couldn't be happier for our friends on their special day!  Afterward (around 7pm) Nate still wanted to party.  Poor guy hasn't gotten out much lately.  He kept asking where I wanted to go or what we could do.  It was true that we were all dressed up with no where to go.  But for me, it had been a long day and I yearned for some pajamas, puppy cuddle time, and a rented movie.  Nate agreed that my plan sounded pretty good to him too.
Today we had a completely relaxing day.  We went for a stroll with our dogs on Lincoln Road, took the scooter to Brickell to see Nate's nephew and eat some P.F. Changs, and took down our Christmas tree and decorations.  We ran into a friend on Brickell while she was in her car and we were on our scooter - life's little unexpected surprises always make me smile the brightest!
But the best thing that happened today was a baby announcement.  Our friends, a couple that is actually the very first couple that Nate and I met together (neither of them knew either one of us from before), and has become some of our dearest friends announced that they were expecting the birth of their first child.  Coincidentally, the couple that introduced us to this couple, and are also very dear friends of ours, found out on Christmas day they too were expecting their first child.  We are overjoyed for our friends!  They will make such fantastic parents!

Friday, January 7, 2011

The Beginning of Treatment

Last night, almost immediately after I finished the blog the phone rang.  It was UM calling to schedule my appointment to begin making the plan for radiation treatment.  I was so enthusiastic that even the woman calling to make the appointment was excited.  She told me they had been waiting to be able to make this call.  We scheduled the appointment for today at 3pm.
I went in today and and the first person I saw was the nurse that works with my doctor.  She greeted me with such a warm smile and said, "We've all been waiting to see you again."  I'm always touched by how caring the staff is at UM.  From the doctors to the nurses to the technicians they really have an incredible group of people working there.
Today they made a mask of my face and then did another CAT scan.  They call it "the simulation."  Over the next two weeks they'll create a phantom version of me and plan out what angles they will use for the radiation.  On January 19th I have my next appointment.  If all goes well, I'll be starting treatment on that day.  What a difference a few days makes!  Going from worrying about not having insurance to starting my treatment plan today really feels like a miracle!

Thursday, January 6, 2011

A Tense and Sleepless Night

I'm a fan of shows like Grey's Anatomy, Private Practice, and Lost.  I like the drama, suspense, and most of the times happy endings  I think my enthusiasm for this type of entertainment confused the "powers that be" and they decided to give me my very own live episode.
I've been in the process of scheduling my radiation treatments for almost 3 weeks now.  Nothing can be done until I am cleared by my insurance company.  I discovered that my insurance company will not cover the treatment at all.  Upon learning this we found out that I could be added to Nate's insurance plan as a domestic partner.  If you know Nate, you know he's a practical kind of guy.  He does his homework thoroughly; so while my parents were saying, "just add her whatever the cost" he was saying, "let's make sure she's going to be covered" or that "they won't deny her for pre-existing conditions" or that "she can keep her current insurance coverage just in case I ever lose my job."  Two days ago I had a mini melt-down and said, "let's just put me on the freaking insurance already so we can get this show on the road."  He agreed.  We were being held up by little strings of red tape here and there and he had already been told that the pre-existing condition was not a problem.  
Upon hearing that I was insured by Nate's plan my representative at UM goes to work to get me cleared by the insurance company to begin my treatment.  She calls me last night around 5:30pm.  I can tell right away it's bad news.  She's practically crying.  She says, "I don't even know how to tell you this but the insurance told me there is a pre-existing condition clause until February of 2012."  She apologizes so profusely that the future psychologist in me can't help but console her.  I find myself assuring her that we'll find another way and make things work somehow.  I hang up the phone saying, "don't worry, everything is going to be fine, I"ll call you tomorrow to see how you're doing."  Nate is listening to me wondering if something is wrong with one of our friends.  When I inform him of the situation he looks at me confused and once my words sink in the look changes from disbelief to horror.  Needless to say, it was not an easy night.  We couldn't sleep we were so worried.  Nate left to work this morning determined to get some answers.  How could we have spent weeks trying to make this happen and fully disclosed my condition to have them tell us that they weren't going to cover me?  I'm so exhausted that I finally fall asleep at 7am.
At 8 am my phone rings.  It's my UM representative.  Her excitement is immediately obvious.  She practically screams, "It was a mistake! It was a mistake!"  The insurance company had give her the wrong information.  After she hung up with me the night before, she called them back and insisted that they must be wrong.  She also insisted that they find a representative in Florida to call her directly by 7:30 this morning.  They did.  She had them on the other line when she called me because she wanted them to apologize to me personally.  I felt like a ton of bricks had been lifted from me.  I think the UM representative had the same feeling!
The insurance company said they would cover 100% of the treatment after the deductible.  The deductible will be met before I even start treatment (during the planning stage).
There is still one authorization needed from the insurance before I can make my appointment to start the radiation plan.  But I think we're just a hop, skip, and a jump away from starting to battle this tumor.
So like my favorite TV dramas this episode ended well and all is right again.  We're all breathing a huge sigh of relief and I'm so thankful for my UM representative.  She's one of my angel warriors helping me along this journey!

Wednesday, January 5, 2011

The Scoop

In November of 2010 I was diagnosed with a large and a-typical tumor of the head and neck.  I had been having pain in my neck for over two years which progressed to headaches, shoulder pain, limited range of motion in my neck and right shoulder, weakness in the right side of my face, hearing loss, jaw pain, and dizziness.  The symptoms would come on gradually causing me to wonder if I had done something to cause myself an injury.  There came a point where it was undeniable that something was not right.
I first saw an ENT who ordered a full head and neck MRI.  The tumor was then discovered and I saw several physicians most of them neurosurgeons.  I found an excellent team of doctors at the University of Miami. After running numerous tests, and debating about performing a biopsy, it was determined that a biopsy was too risky and surgically removing the tumor would also be impossible.  Removing part of the tumor is considered a high risk procedure that could cause me to have more symptoms than I currently have.  The doctors felt my best option was to try radiation treatment.
I am in the process of scheduling the radiation treatment.  The radiation physician told me I would need 6 weeks of radiation, 5 days a week.  The radiation treatment is considered a success if the growth of the tumor stops.  It would be a very welcome bonus if it also shrunk the tumor and/or some of my symptoms were alleviated.  There is a 70-80% chance that radiation will be a success.

The Fine Print

For those wanting some more details...The tumor is thought to be a benign glomus tumor.  It is amorphous in size, highly vascular, and measures greater than 6cm.  It is visible through the ear canal and extends into the base of the skull and deep into the skull just behind the right eye.  It is  encasing the carotid artery and affecting several nerves (hence causing the pain and range of motion problems).  These types of tumors can occur spontaneously but are more likely thought to be due to a genetic mutation.  The tests that have been performed include 2 MRIs, CAT scan, angiogram, carotid angiogram, and a nuclear medicine scan.  The nuclear medicine scan revealed that I do not have any other tumors in my body.
The side effects of the radiation vary from person to person.  The only guaranteed side effects are sensitive skin in the area treated, coloration of the skin like a sun burn, and hair loss.  Other symptoms include fatigue, nausea, headaches, and worsening of my current symptoms but these are not guaranteed.  Long term side effects are rare and scary so we'll discuss those if they ever come up.

How I'm Holding Up

Overall I'm doing very well.  My attitude had remained realistic but positive this entire time.  I do feel that there will be some tough times ahead but that at the end I will come out of this not only physically better, but a better person as well.  I'm blessed to have a big wonderful and supportive family and great friends who have been by my side every step of the way.  I pray that God give me strength, that he guide me, and that he open my eyes so that I may see and learn what I need to in order to help myself heal.  A mentor of mine told me that during the hardest of moments we can also live the fullest of lives.  These words really resonate for me.  The hardest of moments help us to appreciate and become present to the wonder of being alive, sharing with those we love, and the beauty all around us.  It's put into perspective for me how precious things we often take for granted are.  Most of all, during this time I've felt gratitude not only for the love and support, but for the ability to be present to it.


Welcome.  In the past months, I've been so grateful by the incredible amount of love, support, and prayers I have received from friends, family, friends of friends, and even people I don't know.  Your support during this time means more to me that I can express.  Thank you from the bottom of my heart!
It is my hope that this blog will serve to keep friends and family updated as to what is going on with my health and it will also serve as a healing outlet for me and one day a memory of what I have overcome.
Please feel free to leave messages or comments on this blog.  Your encouragement and kind words are what has been my fuel to deal with whatever challenges are presented.

With love and gratitude,