Sunday, July 31, 2011

My Darkest Times

This past week I experienced my very darkest of times during this whole radiation ordeal.  I had been burning and starving and completely disconnected to everything.  I shut myself off.  I got frustrated.  I went to a place so dark I didn’t know how I was going to get out.   I’ve been suffering more than I know how to explain.  The hunger, rather the starvation was (and still is) the most overwhelming feeling someone can possibly experience.  It’s difficult to describe.  My body has been starving itself to death.  My weight has kept on plummeting.  When I got out of the hospital – July 7th 2011, I weighed in at radiation at 105 pounds.  I knew this was mostly water weight because they kept pumping me full of fluid of I.V. fluid.  When I arrived home, I would get up 4, sometimes 5 times in the night to go to the bathroom.  A week later my weigh in at radiation was 94 pounds.  “An 11 pound drop in weight” the nurse says to me.  The following week we’re down to 92 pounds, then the week after it was 91 pounds.   Essentially my body has been eating itself and it feels like I’m starving to death.   There is just no amount of food that can fully satiate me.  I am on a diet of weight gainer shakes at 800 to 1000 calories a pop.  But when I finish eating my heart is beating out of my chest trying to digest. I need probably about 3,000 calories a day.  How does someone consume 3,000 calories a day? 
My whole life my heart rate has been extremely low at rest.  When they would measure it in the hospital it was in the 40’s– that’s normal for me.  Fitness and exercise have been a core of my life since I was about 13 years old.  I even have an undergraduate degree in exercise physiology!  Now my heart rate is 100 beats per minute at rest when I am digesting food.  It is very difficult to ‘rest’ when your heart rate is so elevated all the time.  It feels unimaginable that my body would be wasting away right before my very eyes.  Then there is the infection that rages in my mouth.   There are ulcers that cover my mouth and throat.   This makes it very difficult for me to speak at times.   Food does not taste like food.  It is disgusting.  It tastes mostly like sand in my mouth mixed with the infection.   My radiation oncologist told me that I would lose my sense of taste.  Eventually it should return back to its regular state but it will take a while.   I also can’t sleep like a normal person.  I’m on an extremely high dose of a steroid called Decadron – 4mg 4times per day.   I was placed on it while I was in the hospital.  They make me angry, impatient, completely disconnected, and awake for hours on end.  During the first bout of radiation the radiation oncologist and I decided not to put me on a the Decadron because usually it causes bloating and weight gain.  I had to endure a lot of pain at that time and I was on very high doses of Percocet.  During this second bout of radiation they put me on the steroid while I was in the hospital.   It changed everything.  I no longer have any pain.  I don’t need any oral narcotics but the steroid has made me a completely different person.  I’m almost positive that I’m overdosing on it.  Sleep is a huge problem for me as well.  I can hardly sleep at all – mostly because I am so hungry I need to keep feeding myself and then the digestion makes it impossible to rest at all. I’ll literally just sit and work for hours on end.  But I can’t manage to care about anything that I’m doing.  I notice that I can’t manage to care about other people.   On top of that, I’m confused.  I started to have cognitive deficits.  I noticed that I started feeling disconnected all the time and it scared me.  I would cry the drop of a hat because I couldn’t understand what was happening to me.  I noticed that I stopped caring about psychology – something that I know is my passion – but I couldn’t connect with it – it was an indescribable feeling of just not being able to associate to anything at all.  I was with Ili the other day waiting for my radiation and there was this lady telling me that she has lung cancer and she’s so sad.  I noticed first that I couldn’t follow along with what she was saying to me, her words were just lost, I was so confused that I couldn’t comprehend what was coming out of her mouth.  All I could think was, “Why is she speaking to me and who in the world cares about her?”  Ili noticed that I had this look on my face I could tell she was little freaked out about it.    She commented that I was emaciated and that I need to eat.  Everyone is always commenting that I’m emaciated.  That part is the part that I know.  I would look at myself in the mirror and I couldn’t recognize the girl that was looking back at me.  I hated looking at her – such a strong word and it’s the only one that fits.  She’s ugly.  She’s emaciated.  She looks like she came out of a concentration camp.  Her legs are just bones.  She’s disgusting.  She’s bruised because of the blood thinners.  All I can see is her ugliness.  I would put on makeup to go to radiation; I would try to smile at people but I knew that  was just being a total a fake.   My vision is also still blurred and I experience double vision.   It’s another thing that is driving me crazy.  I can see from up close and the doctor that I am seeing for my vision says that it could resolve on its own but so far it hasn’t.  These were all just constant reminders that I’m not well.  I was feeling so awful about having to go to radiation every day.  They make me lay down on a machine with this huge face mask strapped down to a bed that burns me every single day.  I feel it.  I taste it.  It’s been mentally excruciating.   I’ve just felt like screaming - somebody save me.  Then there were my poor dogs.  I was feeling so disconnected from them that I started having visions of killing them (no joke).  I told Nate that I was going to throw them off the balcony.  My parents really freaked out when they heard that!  Then there was God.  I didn’t know or remember that there was a God.  I literally didn’t stop to think of God. Who thinks of God when you’re starving to death and burning?  I couldn’t even manage to get myself out of a chair without extreme effort.   All I could do was wonder who was going to save me?  My body was just going to eat itself to death.  I had to take what seemed like way too much steroids, and I knew that the steroid medication was causing me to feel so disconnected.  I felt like I was overdosing on the meds.  On Wednesday my radiation oncologist started to wean me from the steroid- FINALLY!!!  My skin was also burning all around my neck.  The doctor gave me this excellent prescription cream but it felt like such an effort to put it all on all the time.  I had to do it because I literally felt the skin so hot all around me all the time.  Everything was such an effort. 
Yesterday morning at 3:00 in the morning I literally woke up.  I woke up after a much better day spent with my mother.  She made me laugh, and although I had some very hard moments I started to come out of it.  I slept for 7 hours and when I opened my eyes I looked at my phone and a prayer had been written to me by one of my parent’s friends that I do not know.  I took the time to comment on the last blog post appropriately titled, “Burring and Starving.”  I started sobbing of joy.  Poor Nate woke up thinking something was seriously wrong with me because I was crying so much.  I told him that I’m me again.  I could finally think clearly. I cared about everything – Nate, our love, my family, our dogs, my company.   I am no longer experiencing cognitive deficits, and I was touched, moved, and inspired by the Grace of God inside of me in a way that I can’t explain.  I felt as if a full embrace had been given to me.  It was something so beautiful that it felt like a miracle to me.  Right now as I write this I have my smallest little dog, Nike, asleep on top of me like the little angel that she is.  One of the most amazing things that came out of this is that we no longer have the dogs sleeping in the bed with us.  I literally became a Caesar Milan alpha dog over night.  I’m very proud of myself for this!
 Yesterday I spent time with my family and was able to fully engage and not be confused and care and laugh and enjoy life again.  I do feel that I’ll get through this.  I can tell I’m getting stronger.  My weight is also holding -maybe even going up a pound!  I can’t wait to get back to school one day and become the psychologist I’ve always wanted to be!  I never want to experience that kind of dark hole that I was in again.  It was excruciating.  I do still believe that I have been placed on an overdose of steroids and that is what is eating my body is making it so difficult for me to gain weight.  I’m not sure what kinds of steps I’ll take regarding this.  But today I am a fighter once more.  Today I know that I can get through this.  I’m working on breakfast already – weight gainer shake – been up since 2am and went to sleep at 10 – crazy that I just have to keep feeding myself but I’m doing it and doing it happily!
 I realize that I have the love of the most amazing family, and of course not to mention the most amazing fiancé in the world!  I can’t tell you how much gratitude filled my day yesterday and already this morning.   Thank you to everyone that has been so concerned about me and that has been praying for me.  I truly believe that your thoughts and prayers have saved me!  I can’t thank you enough!

Thursday, July 21, 2011

Burning And Starving

I’m taking quite a physical and emotional beating these days.  Yesterday my radiation oncologist (Dr. Teddy Bear) gave me a break from my radiation treatments until Monday.  The skin on my neck is pretty badly burned and peeling.  While the outside doesn’t look nice, it’s the inside – the throat that suffers most.  Swallowing is a huge chore. My mouth feels and tastes like constant infection.  I live with a toothbrush in my mouth but it’s painful to brush my teeth because of all the ulcers that have broken out.  My energy levels are mixed.  My weight has fallen drastically low.  The weigh in yesterday was 92.8 pounds.  Thankfully the doctor doesn’t seem extremely concerned about the weight.  He expects that it will continue to drop.  My body looks emaciated.  There are no words to describe.  I can’t wrap my brain around it.  I literally look like I’ve been in a concentration camp.  It also doesn’t help that my body is all bruised due to the blood thinners that I am on.  The thinness bothers me.  It takes a toll on my self-esteem.  I am on a liquid diet of weight gainer shakes.  I try to take in as close to 2000 calories a day – but it’s a struggle to get there.  I dream of food.  I dream of gorging on food – being able to taste it again.  My taste buds no longer work.  I guess it doesn’t really matter when all you can swallow are liquids.  A nurse asked me about a feeding tube.  I was appalled.  As long as I can suck something down a straw – no matter how painful, I will do that.  Maintaining a sense of normalcy is important for me.  A feeding tube seems so unnatural.  It’s just not an option.

I’m feeling incredibly grateful that I don’t have to go to radiation today.  The radiation this time around is so different.  I can taste the burning inside of me.  The thought of lying on that table today and letting that machine burn me from the inside out is just more than I want to put up with.  I know that come Monday it will be time to take up the fight again.  I’ll be ready.  I’m just glad for the break.

There are 7 treatments left.  I’m so close to the treatment finish line – and then the real work begins.  Radiation is a bomb that goes off after the fact.  It gets worse before it gets better.  But better comes.  I already know that better comes because I was there when I found out that the tumor had grown down my neck.  I’m so hopeful that we will get all of this tumor once and for all and that I’ll be able to return to a normal life again.  I’m so ready – so excited to have this behind me.  I tell myself to just keep looking at this future that lies before me.  Nate and I have so much to live for – so many blessings in our future – so much life to build.

Nate is currently in Colorado visiting his parents.  His mom is doing incredibly well.  We feel extremely lucky that she is recovering the way she is.  I thank everyone that has been holding her in your thoughts and prayers!  We are extremely grateful to you!

Yesterday I was telling Ili how this whole experience has a way of putting life into such a different perspective.  My whole life I’ve been so worried about my body; about being thin enough or beautiful enough – so much time wasted on silly preoccupations.  I look at my emaciated self now and see pictures of the woman that I was just a couple of months ago.  I remember her angst, her calorie counting, her gym sessions.  I can tell her now that none of it matters.  All of those preoccupations were for nothing.  She can be set free to preoccupy herself with things that matter so much more.  It is all about the relationships with others – the love we put out into the world.  It comes back ten-fold.  I’m incredibly aware of the compassion and love that surrounds me.  It gets me through this time and keeps me fighting the fight.  It is beyond moving!

Friday, July 15, 2011

The Evangelizing Healer

A few weeks back my mother and I went to go and see someone who wanted to “lay hands” over me in prayer .  I am always open to prayer in any way, shape, and form that it comes.  I often pray that God put me where I need to be when I need to be there and that He keep mine and my doctor’s eyes and ears open so that we may also be in the right places at the right time.  It was a usual afternoon, except that we were running a little bit late because the doctor’s appointment and radiation had run behind.  We arrived at the home of a gracious couple who knew this man and who has been diligently praying for me.  Upon arrival he tells my mother that she looks very familiar.  She says that she hears this often and he immediately enters into an almost 45 minute discussion about how Jesus also had one of those faces too.  People were drawn to Jesus and the healer just felt that God had very big things in store for my mother but that she had not allowed him to do that work properly.  I could tell this wasn’t exactly going over so well with her.  In psychology, we have a term called the “Barnum effect.”  It basically applies to very general statements that appear to be true of one person but in actuality are true of many people.  He was telling my mother that when she lays down to sleep at night and prays to God for all those secret things she wants deep in her heart that God is listening and just waiting for my mother to be open enough to do his work.  I’d say, she’s beyond open to “God’s work.”

Eventually he addresses me.  I tell him that I am sick but I am very happy and very much at peace.  I walk with God.  I have come to know God in a new way thanks to my illness.  I feel an incredible loving embrace from my maker with me at all times.  I told him how I have never once blamed God for any of what has happened to me and that basically I was there because I am open to being where I need to be when I need to be there.  He ponders what I say and tells me that I clearly exude a peace about me but it is as if I am holding the right key and just not turning it quite right.  He holds up a key set for me and tells me that if he were to ask me to unlock the door, the natural first question would be, “Which key opens the door?”  He goes on to explain that God likes to be spoken to in “his language” and that this language is located in the “mysteries of the bible.”  I am a Catholic.  Our healer is obviously a Christian.  He asks me if I have accepted Jesus Christ as the savior of my life and I say, “Yes, I’ve made my confirmation.”  I knew that this was not what he was looking to hear.  He tells me that he had gone down that road and in fact was in the seminary to become a priest but he did not complete the training because he found God in a new way.  We are both being very respectful of each other’s answers and he acknowledges that with all that I have told him, I clearly accept Jesus Christ as the “savior of my life.” 

But next, something interesting happened that prompted a whole inquiry in me.  The husband of the home asked me if I ask God directly for my healing.  I had to stop to think.  The truth was that I had not.  I have always prayed in gratitude.  The husband said that, “As God’s child it is my hereditary right to specifically request my healing.”  He had a point.  I figured it was enough to ask God to open my eyes and ears; ask for guidance to be at the right place at the right time.  Was I afraid to be disappointed if I was not miraculously healed?  Am I simply not conditioned to ask God for anything?  I even had to consider all that I get out of having this tumor.  Do I take it lightly?  There is no part of me that feels this will end in tragedy.  Am I just resting on my laurels while people all around the world are praying for my healing?  I wasn’t sure.  I knew I had some pondering to do.

Next, my mom and I, our gracious couple hosts, and the healer all get up and form a circle.  He begins to pray and cry.  Our hosts also begin to cry.  I am wanting to comfort them.  I am ok.  I often become quite emotional in prayer but the emotion in the room seems off.  After about 10 minutes of prayer, it’s over.  The healer and our hosts stop crying.  They turned off the water works just as quickly as they had come on.  It was odd. 

The healer then tells me how he would like me to look in the bible, to unlock the “mysteries” that lie within.  He invites me to come to his church to pray so that I may be healed.  He tells me that he does not know why God has put this lesson in my path but I will find answers if I look.  Of course, for me, this illness has nothing to do with God.  As my mother says, “Nothing bad comes from God.”  This is not a “lesson” that God is trying to show me.  This is just part of “crap” that happens in life.  Nonetheless I am very grateful for the healer’s time and energy.  I am grateful for the food for thought that he has given me to ponder and I am touched by people’s generosity and love.  I was present to his love.

In the days that followed I opened an inquiry into why it is that I do not specifically ask for my healing.  I spoke with my Dad about all I get from having this tumor.  I can’t deny that I have received so many blessings and that I am aware of them is one of my greatest miracles.  I blog constantly about it.  I get to see one of my parents every single day and spend an afternoon with them – what a gift!  I have a closer relationship to Nate because of what we have been through.  I am so fully present to such an extreme amount of love all the time.  My dad said to me, “However you internalize this is always going to be inadequate.”  For some people, like the healer, this is a lesson from God.  It gets God off the hook and puts me at the fault of the tumor.  In other words, God wants to heal me, it’s just me that’s not open enough.  For my father, God is inconsistent.  But none the less he is in constant prayer for my full healing.  For me, God is just omnipresent and this actually has nothing to do with him.

I went to my mentor with my questions.  He too opened an inquiry for me when I told him that there was no part of me that thought this would end in tragedy.  He asked if I had considered that it would.  The one certainly was that I would die, eventually, from something and it could very well be this.  An out pouring of tears came out of me.  It was not because I was afraid of my death but because I am afraid of what my death would do to Nate and to my family.  I have grown up in a big loving family where the worst thing that could happen is the loss of a child.  It has been something inbred in me.  For me, my life has been so full, so wonderful, and if it ended now, it would have been an incredible life.  BUT there is so much more to live for.  There are children to have, memories to make, a whole lifetime ahead to live.  I realized that I do not take this lightly whatsoever.  For me, getting through this, staying alive, and making a full recovery is all there is to do.  I realized in that moment that the way I pray is simply a matter of conditioning.  I have since become very clear with God in asking for my healing.  I’m ready to be healed.  I’m ready to move on from this; to start the next phase of my life.  I was so grateful to my mentor that day for showing me that this is not something which I take lightly at all.  When I think of Nate, waiting his whole life to propose to a woman only to find out a couple of months later that she has an inoperable brain tumor, my heart breaks in immeasurable pieces.  How could this happen to someone like him?  He deserves that I fight every single day this fight to the fullest extent.  My parents which live and die for their children deserve the same.  And so I am.  I am fighting and praying and connecting with all the powers that be constantly.  My weight has fallen to dangerous lows but I’m making it a full-time-job to strengthen and heal my body.  One day at a time…and God is always at the wing!

Monday, July 11, 2011

From Rock Stars To SCARY Parts

My life today is a miracle.  A little over a week ago I experienced the most wretched 24 hour low of my illness.  I went to a place that felt so dark that time escaped me and my body felt like it was not my own. 

But to tell this tale properly, I must take you back to two days before the episode, June 29,2011.  Nate and I had been waiting for 2 years for this date - The U2 concert!  Bono received an injury last year prompting the band to postpone the concert for an additional year.  We had incredible seats - as close as you can be to the stage and still have a chair.  I felt physically good, there was magic in the air that night.  Over 100,000 people packed into Sun Life Stadium to watch this iconic band do their thing - and their "thing" they did the way only they can.  During the concert Bono sang a special song that was written for the latest Transformers movie blockbuster.  He mentioned that the premier was in South Beach the following night.  Nate and I of course knew about the premier.  The director, Michael Bay, is from Miami and he really wanted to have a big opening here. 

Nate pulled a rabbit out of a hat with the help of an amazing co-worker and at the very last minute we got tickets to the much anticipated VIP premier (where maybe, just maybe - U2 would show up).  It was the evening of June 30, 2011 and it was raining out but I was feeling good and we were getting the VIP treatment.  As we entered the theater we noticed that some seats were reserved and we sat two rows back from them.  Nate being so tall likes the row with the extra leg room.  We had been inside avoiding the rain and crowds and I hadn't spotted any celebrities yet but within moments Pat Riley and his wife walk into the room, then comes Michael Bay and Tyrese Gibson- one of the major stars of the film, and THEN in walks U2's "The Edge."  No one but me seemed to blink.  I didn't blink - I almost jumped up.  I was shaking Nate's arm, gasping for breath, absolutely star struck!  Did people not recognize him?? Who doesn't recognize the skull cap wearing "Edge?"  He was two rows in front of me, engrossed in covo with Pat Riley and I didn't have the guts to ask for a picture.  I have never experienced 'star-strickenness' in my life.  But come on - who sits in a movie theater with a band member of U2?? They live in Ireland!  They are, as my friend Andrea called them, "Rock and Roll Royalty!"  So I did the only thing I could - I turned into a tween and took pictures of the side and back of his head with my black berry from two rows behind.  The movie was incredible - by far the best Transformers of the series.  After the movie we went to the VIP after-party at LIV (a major nightclub at the Fontainebleau Hilton).  I was done for the night but the thought that I might get another chance to hang with “The Edge" was all the adrenaline I needed to keep me going.  Sadly there were no more "Edge" sightings but it was another magical night out that will forever live in the memories of my mind.

The following morning was July 1st 2011, a usual Friday.  I had a busy day scheduled, blood work at noon, radiation therapy at 2pm, physical therapy at 4pm and a visit with my mentor at 6pm.  Ili picked me up and we were on our way.  I had missed 3 sessions of physical therapy because I endured a very bad headache the previous time.  I over-estimate my strength and endurance and push myself harder than I should (occupational hazard of being me).  After physical therapy the headache came - you guessed it - I over did it.  I'm not a stranger to headaches though; they're just part of the course.  I took my Percocet and Ili and I went to grab a quick bite before visiting my mentor.  I knew right when I ate an empanada and a hardboiled egg that it didn't sit well with me.  I was already nauseas but I could tell that something wasn't quite right.  I pushed it to the side wanting to make the most of my wonderful mentor visit.  The mentor visit was incredible and it's a separate blog in and of itself (coming soon - I promise).  I left grateful and with my soul nourished. 

But by the time I arrived home my nausea and headache were getting out of control.  Something was seriously wrong.  I found myself in the bathroom (literally on the toilet) doubled over and pukeing my guts out.  I'm already terrified of throwing up.  This felt so violent, so forceful, so long, so agonizing but it eventually subsided.  Poor Nate walked into a mess.  He humbly, lovingly, and a little bit shockingly went to work cleaning up the disgusting mess.  He laid me down in bed and went to watch some TV in the living room.  I proceeded to throw up just as violently (but luckily not all over the floor) all night long.  Nate was living in a half wake/half sleep.  He was exhausted, I was exhausted.  Time was escaping us.  We were aware that I wasn't keeping any pain meds in my body - everything was coming out.  My parents were aware that I was sick but they weren't fully aware of how bad it was because I couldn't communicate it and Nate needed a break.  In his mind, this was just part of the course.  I continued to throw up all day.  I lay in bed and got up only to get to the bathroom just in the nick of time.  I couldn't communicate to Nate how bad things were - how out of control I was; how much pain my body was in.  There was just no strength in me.  By the time my parents arrived at my home on Saturday night I was living in what seemed like a house of horrors to me.  There was nothing left in me to come out.  There were no pain meds in my body.  I couldn't get myself out of the bed without violently throwing up - throwing up nothing.  I felt like death.  I verbalized that I thought I was dying.  My parents realized that transporting me to the hospital would not be an option and they called an ambulance.  I don't remember the ride over.  My vital signs were stable but the pain was so excruciating that everything was a blur.

When I arrived at the hospital, the evening of Saturday, July 2, 2011, there were already teams of doctors waiting for me.  They were super fast.  Within the hour they had IV's in me, drugs, a CAT scan done, a chest X-Ray, and an MRI scheduled. The care that we received at the University of Miami hospital was impressively top notch.  The nurses, the staff, the genuine care was beyond moving.  It was the Fourth of July weekend and doctors from all of my teams came to visit and assess the situation.

I started the Fourth of July with a 3 hour MRI which showed that the tumor is swollen and that the radiation is doing its thing as it should.  It also showed that I have a palsy in my 6th cranial nerve which is causing me to have double vision and blurry vision.  The thought is that this is mostly due to the tumor swelling and I've been put on steroids to help combat this.  The doctors are hopeful that this may resolve on its own but they have always been very concerned about my vision because the tumor in the head area is very close to the optic nerve.  For now, the plan is to give it a month and see what happens.  For me, this is a game changer.  Up until now, I've had to go to radiation, take drugs, do physical therapy, etc.  But considering all that is going on, I've been perfectly "normal."  I no longer feel "normal."  I can only see up close.  I have to close one of my eyes to not have double vision and I can't perceive depth, I can't see from afar.  It is a constant reminder that I have a serious illness - there is absolutely no denying it to myself now.  I just can't escape it.  Truth be told, it's made me cranky and frustrated.  I've verbally complained about it - something I had never done until now.  I can no longer see the world as it should be seen through my eyes - it's such a strange out of body feeling.  Whenever in my life I have felt out of control, I have a recurring nightmare that I am in a car and I can't see the road clearly.  I can't get full control of the car - things spiral - and even though I don't crash I'm so afraid.  That's exactly how the road looks when I sit in a car now.  It boggles my mind.  But before I get too melodramatic, this is not a permanent condition.  If after a month, it does not reside, I can have either a small surgery or get glasses and correct the problem. One way or another I'll be back to pretending I'm "normal" again in a month.

I was discharged from the hospital on the evening of July 6th without my vision but with my steroids, pain meds, and the love and support of my friends and family radiating gratitude through my spirit.

The morning of July 7th, as I was at the eye doctor appointment Nate sends me a text that his mother has been hospitalized.  They think she suffered a stroke.  How could this happen?  How could this happen to him?  Who has the stress of their fiancé in the hospital only to have things resolve and then their mother sick??  I wanted to jump out of my skin; to comfort him, to comfort her.  His parents live in Colorado and she was transported to the ICU.  Meanwhile Nate's birthday is July 9th.  It's his birthday weekend!  His fiancé can't see and his mom is in intensive care.  Life just knows how to throw curve balls. 

I wanted this birthday to be so incredibly special for him.  Nate is my rock. He has had to endure more than his fare share and he does it so graciously, so humbly, so full of love and devotion.  I can't be grateful enough for the angel that he is in my world. Friday night I took him to dinner for a pre-birthday celebration.  I can't taste food anymore but he really enjoyed himself - score.  Saturday, I treated him to a little clothing shopping spree and bought him something he has been wanting for years -literally - a coffee maker.  Every time we go to Target, he looks at all of them and has never purchased one.  He's over the moon with his little coffee maker - score.  Saturday night, we met up with our friends, Aura and Dennis, for an incredible dinner and much needed friend time.  They are the type of friends that fill your soul with love and goodness.  We are incredibly lucky to have them as part of our lives - another score.  Then yesterday, Nate and I went down to the Standard Hotel and pampered ourselves all day long at the spa.  It was an unbelievable day!  It's Miami Spa Month and they were all booked out of treatments.  We had been on a waiting list all day long. After much diligence on my part we managed to get two incredible massages and scrub downs at 9pm AND two extra day passes because our treatments included a bath and they were closing at 10pm.  We had already had our bath for the day though - it was one of our first indulgences - with Milk and Honey!  They day passes alone are a $160.00 value!  What a huge score!  A very special thanks to The Standard Spa in South Beach for making our day and experience so amazing!

But the very best news was yet to come.  Nate's mom was getting out of ICU!  She is finally responsive and he even got to speak to her on the phone yesterday.  He is heading out to Colorado this week to be by her side.  We still do not know what is wrong with her.  They are currently ruling out an infectious disease and then they will do another MRI.  The hope is that this is not a brain tumor.  We are concerned because she is having swelling and spasms to her brain.  I so wish I could go with Nate to be with his mother but unfortunately I can't interrupt my radiation schedule.  I will be there in thought and spirit and prayer.  I ask that this wonderful community that has been so loving and supportive of all that is going on with my life please also pray for her.  Keep her in your thoughts so that she may feel how much we want her to get better.  She is an amazing woman that I can't wait to cherish as my mother in law for many years to come.

And so today, Monday, July 11, 2011, I have radiation at 2pm and I will officially have passed the halfway mark of this second round of radiation treatments.  The weekend was a huge success.  My body is very weak and thin and my neck area is a little burned but my spirit and my energy level is extremely high.  It’s the steroids.  They make me feel invincible.  I have so much energy that I don't know what to do with it.  I don't need to take any oral narcotics thanks to my nerve pain meds and the steroids.  Unfortunately the drugs do have about a zillion negative side effects but they don’t seem to really affect the body until taking them for about a year.  They are a necessary tool in my arsenal right now and I am grateful for how good they make my body feel and the energy that they provide me with. 

My life today is a miracle. If you would have told me that I would feel the way I do today after the way I felt just a tiny moment ago, I would have thought it impossible.  The bump in the road was very scary.  But I made it out the other side.  The other side is beautiful.  I’m extremely emotional for the love and support that continues to surround every moment of this journey.  I’m a total cry baby again all the time but it’s a good thing – a healing thing.  Thank you angels, friends, and supporters for your healing energy.  I am so in touch with your love.  It has rejuvenated me with the strength I need to get through this second half of treatments.  Thank you from the bottom of my heart, soul, and spirit!

Mom is on radiation duty today.   I can’t wait to see her!

Monday, June 20, 2011

A Compilation of Pain, Gratitude, and Tweets

The weekend started with a bang – literally.  My head felt like it had been banged by a sledgehammer on Friday night.  To top it off I had a horrible feeling in my throat and I was extremely nauseated.  Three hot showers, a frantic call to the parents, some crying, a very worried Nate, and 3 Percocets later I was finally asleep for the night.  Saturday morning greeted me with a whole new surprise box – a pain in both my legs.  It felt as though the headache had traveled downward.  The pain still persists today but is completely alleviated when I lay down.  As usual my doctor is puzzled.  “Nothing is ever normal with you is it kid,” he said to me just a little while ago.  Dr. Teddy Bear ordered an MRI of my legs and lower spine to be done this coming Friday.  I’m putting off any worrying until we get the results.
Saturday night Nate and I went to Casa Artime at midnight to give my dad his father’s day present.  The whole family pitched in to get him an ipad 2.   My sister showed up with her husband, the three kids, and the dog (who was injured) all under the real pretense that the dog needed help ASAP.  No, my dad is not a vet but perhaps in another life he was.  At 12:15am Casa Artime had 5 kids, 3 grandkids, 2 dogs, and 2 significant others all gathered.  The funny part is that in my dad’s vision of the perfect life that’s what all Saturday’s at midnight look like so he didn’t even think to suspect that we were all plotting a big father’s day surprise.  He was very happy and surprised by his present and after about 2 hours we all went home to sleep so that we could go right back Sunday afternoon for a bar-b-q and pool party.  I think Father’s day turned out to be a success.  Good thing too because when you’re as lucky to have a dad as wonderful as mine you have to make sure that his day is as special as he makes all of his kids feel every day of our lives.  Cheers to all of the wonderful fathers out there.  I hope you enjoyed your special day!
Meanwhile I wanted to let everyone know that I opened a Twitter account this weekend.  Sometimes it’s hard for me to write a full blog but I figured this way I can keep everyone up to date with a quick tweet.  You can find me under my full name – Maria Artime.  If you’ve never used Twitter before and are worried it will be a long set up process or that you won’t be able to figure it out – don’t worry.  It’s very easy to set up and extremely user friendly. 
Today at radiation Ili gave me a rosary that was given to her by a woman who told her that she felt it should be in my hands during this time.  She has been praying for me and she felt as though she was given a sign that the rosary was meant for me to hold for a while.  I promised to keep it with me for as long as it was mine to keep.  It still amazes me that people who don’t know me are moved to think of me and pray for me.  It feels like a wonderful privilege that I’ve done nothing to deserve but can’t be grateful enough for.  I still haven’t found a way to express my gratitude in a manner that does how I feel inside justice but I’ll keep using the tools I have in the hopes that one day I find the right words or way to convey the message.  Thank you for your thoughts, your prayers, your words of kindness, and your support.  They give me strength and hope, bring me joy and laughter, and fill my heart with feelings that bring tears to my eyes and heal my sorrows.

Thursday, June 16, 2011

The Second First Day of Radiation

Yesterday was the first day of radiation to my neck area.  As I arrived with my dad it felt familiar; kind of like it was the first day of a summer camp I had already been to.  The difference was that thoughts of, "Will they like me? and "Will I make new friends?" were replaced with thoughts of, "Will I have my same radiation technician?" and "Who will I meet this second time around?"  The truth is I never really liked summer camp.  It didn't matter how nice the counselors were or how friendly the campers seemed; I always felt like I didn't belong.  I think some of those same feelings apply to round two of radiation.  I don't want to be there and even though I'm familiar with the people, process, and procedures, I still feel like an outsider.  I would imagine that everyone feels somewhat like me at a radiation clinic.  Perhaps that's a very healthy reaction.  My mind is telling me to not get too comfortable because I won't be in this situation for long.  Perhaps I'm just rationalizing my discomfort.

Looking back at my first radiation session seems like night and day in comparison to this time around.  I had no idea what to expect.  I was fascinated by the room and the machine that is used for administering the treatment. I called the blog, "Radiation Magic" and compared the experience to Disney World.  This time around I feel like I just want to get off the roller coaster.  The "magic" is not only gone, it has been replaced with fear.  That's the beauty of ignorance; it truly is bliss.

I met with the doctor before going in for my first treatment.  He explained to me all the risks associated with this round of radiation (which are greater than the first time around), he showed me the plan he had made and then compared it to the previous round.  I remained cool, calm, and collected on the outside but on the inside I felt like I had been locked in a room with no doors.  Of course there is a door.  I don't have to go through any of this.  I can simply refuse treatment and let my tumor do what it will.  The trouble is that this path only leads to another room with no doors.  I feel stuck and out of control.  If you know me, you know that 'out of control' is way out of my comfort zone.

Luckily I do have the same wonderful technicians and of course my doctor (Dr. Teddy Bear) was as pleasant and wonderful as always.  He scared the crap out of me but he did it as nicely and gently as he could.  He said that my tumor is acting "un-glomus like" (my diagnosis is a-typical glomus tumor).  Also the radiation area this time around is much larger than it was the last time.  The major risks all have to do with trouble eating, swallowing, producing saliva, and movement of my jaw.  I had all of these issues during round 1 and they were thought to be unusual then.  This time, they are what is expected.  I dropped 20 pounds (basically all of my muscle mass and then some) during radiation my last round or more accurately it was after my treatment had finished.  I can't afford to have that happen this time around.  I've gained about 5 pounds back and will be doing all I can to gain some more weight in the coming weeks.  If I don't, and I experience similar issues, I will require a feeding tube - something I would like to avoid at all costs.

The actual radiation session is much shorter this time (around 5 mintues).  I have to lie on a table, with my new face mask that covers all of my head and shoulders, and extend my neck all the way back.  It is somewhat uncomfortable but for 5 minutes it is very tolerable.  I still get to look up at the same beautiful ceiling with the sky and the fiber optic stars while the background music plays.  I will still be imagining little soldiers coming in to attack and kill my tumor.
I also still have a fighting attitude.  I still choose to look on the bright side of things and bring a positive attitude to my life.  I accept the challenge of this round of treatment and will do all I can to bring positivity and joy into my life.  I am also somewhat optimistic because I am armed with better medications now.  My team of doctors has also grown and we have gained new insights on how this tumor acts and reacts helping us to combat some of the side effects produced.  What's really changed this time around is that I kind of know what I can expect.  It's not fun and the thought of going through it all over again is very frightening.  But the only way out, is through.  So ready or not, here I go.

Saturday, June 11, 2011

I'm Feeling Lucky

Any of these words would work just as well for how I'm feeling...wonderful, happy, energetic, and blessed.  Also I'm feeling a little bit guilty because I haven't posted a blog in way too long.  I'm so sorry my friends.  Two blogs last month is really an unacceptable all time low on Grace, Joy, and Healing.  The truth is as I've started to feel better and better, I've gotten a new found energy and a new project to put it all into.  The project has required more of my time than even my psychology doctoral program has.  It is an undertaking of a magnitude that is scary and requires that I dream bigger than I ever have dared to before.  But I've discovered that living is done to its fullest when it’s done in this "scary" zone. 

OK I won't keep you in suspense any longer.  I'm starting a company called Color My Sole that is a women's shoe accessory company (more details to come very soon).  Nate and I have been working with a patent attorney to get our idea patented and it looks like we have a patentable product.  We have also been researching, learning, reading, developing, and speaking to everyone we know that can give us any ideas and/or help.  We've registered the domain name and hopefully the website will be up and running very soon.

The company name is very significant for me personally because it is a play on the words color my soul.  Not only am I feeling better than ever, but creating and working on this company has literally colored my soul!  It was my wonderful mentor who pointed this out to me the other day.  Thanks mentor!   The enthusiasm in me in uncontainable and it has breathed new life into me.  My soul has literally been colored!  For example, I still have a tiny bit of pain on some days but I have completely weaned myself off of all oral narcotics.  I can't afford to have my mind any less than super sharp these days.  Also I still sometimes get a little fatigued, but I now have the energy to push through and conquer the fatigue without even taking a nap.

As I've written before, I'm a huge girly girl into all things fashionable and I love shoes and high heels, so to be able to do something in this industry is a delight for me.  But more than this, the bigger picture is to think that one day I can have the honor and pleasure to give other women colored souls and a little extra bounce in their step regardless of what life is currently throwing at them.  So you see, this is the true reason why I'm feeling lucky!

Next Wednesday I start radiation round 2.  I know what to expect in some regards and in others I really have no idea.  I know that this time around I'm entering into the process feeling amazing.  Also I'm on a medication that has controlled my nerve pain and doesn't make me feel like I have a curtain over my head (that's how the narcotics make me feel).  My family is already in discussion of who's taking me to my treatment everyday of the week.  Of course I can take myself; I am driving again.  But they really do it out of moral support and I love and look forward to the time I get to spend with Ili, my mom, or my dad (some days all of them at once).  It's definitely one of the highlights of the radiation process for me.  Nate will of course be here to hold my hand, get my medications whenever I need them, and give a lucky girl all the love and support that I could need during this time.  This blog will also continue to give me the strength I need to carry on my journey through the wonderful messages and support that I receive from all of you.  Those are all my “knows.”  The unknowns I really can't say; that's why they're unknown ;-).  But whatever comes, will come, and we'll deal with it when it does.  No use wondering about what might be.

From now until whenever the radiation starts to slow me down (if it even does) I'll be full speed ahead - living in the exciting and scary zone but feeling incredibly lucky that life gave me the "AHA" moment I needed to create Color My Sole and hopefully make women around the world feel that their soul has been colored as well!

Monday, May 23, 2011

Do You Want The Good News or The Bad News?

I'll give you both.  The good news is that I'm feeling a million times better than I was two weeks ago.  My pain is under control and I have been able to drastically reduce the amount of oral narcotics that I was taking.  Even better, we now know that my tumor has definitely responded to the radiation.  When the doctor looks in my ear, he can see my ear drum (it was not previously visible) which means that the tumor has not only stopped growing in that area, it has even shrunk a bit.  My nausea, the ulcers in my mouth, and the pain in my jaw has also decreased.  This means that I'm eating more and hopefully I'll be regaining some of the weight that I have lost.  For the very first time on Saturday I was able to chew gum.  That was an amazing feat for my jaw!  I'm currently doing physical therapy at UM twice a week for my shoulder and my neck and my therapist tells me that I am making great progress.  My hair has started to grow back in the areas where I lost some.  It grows back for most people but not everyone is so lucky.  The blood clot in my jugular vein also appears to be gone.  This means that I should be able to get off the blood thinning medication which is considered a double edged sword.  I've also started to require less sleep.  I can wake up after a night’s sleep of 8 to 9 hours and only require an afternoon nap to re-energize.  My muscle spasms are almost non-existent.  I still take a muscle relaxant at night but I haven't had to wake up screaming in the night for over a month now.  I also haven't awoken in so much pain in the middle of the night that I need to run and take a shower in over a month and a half.  My rest is actually restful and I sleep through the entire night.  Nate is grateful for that as well.  Those nights I would wake up screaming from muscle spasms were not fun for him either!  What I am most appreciative of is that I can recognize what a wonderful blessing all of this is.  I am trying my best to take full advantage of this and every precious moment in my life especially since I am now aware of the trials that lie ahead.

The bad or "not so good" news (as I prefer to call it) is that the tumor has grown down my neck.  It is growing inside of my jugular vein (where the clot was).  This area did not undergo radiation.  It is also not an area where the doctors can surgically remove the tumor therefore surgery is once again out of the question.  Something must be done about this tumor growth because allowing the tumor to continue to grow would have detrimental effects.  The only option is to undergo another round of radiation treatment.  The fact the tumor has grown so quickly once again puzzles my doctors.  There has never been a biopsy because when the doctors weigh the pros and cons of undergoing a biopsy procedure the cons currently outweigh the pros.  That may change in the future but for now they are left puzzled.  The type of tumor my doctors believe this to be is a glomus tumor, an extremely a-typical glomus tumor, but none the less glomus is the current diagnosis.  The thing that makes them once again scratch their heads is that glomus tumors grow very slowly and mine is growing at very rapid rate.  In essence, we have no clue what is going on here.  In my last blog I was unsure of where I stood in this process.  I now know that I am indeed in, "the eye of the storm."  And so I am trying to focus on the "now" while at the same time doing all that is necessary to secure a successful "later."  This week there will be more doctor's appointments, possibly more blood tests, and more intense conversations to be had.

A wonderful friend and I were having a conversation last week about the things that people say to console you.  Such as, "Everything happens for a reason," and "God works in mysterious ways."  I personally like my mother's saying best especially if we are bringing God into the conversation.  She says, "Nothing bad comes from God" and she also likes, "The miracle has already happened, it is her; we are just waiting for the cure."  Thanks Mom!  The truth is that it is a human phenomenon to find meaning as to why things happen in the world the way they do.  It is in the fabric of our very nature.  I took a course once that put it into perspective by calling humans “meaning making machines.”  They explained that just as a washing machine washes, flowers grow and bloom, and light switches go on and off; humans make meaning.  We’re just trying to wrap our minds around things and make sense of them; that’s all.  But the reality is that life just is the way it is because this is the way it is.  And it is perfectly ok just like that.  I have to undergo radiation again because the tumor grew.  The tumor grew because that is the nature of tumors.  I have never been angry at this process because I can fully embrace this idea that I am sharing with you.  I certainly don’t have God to blame for any of this.  This is not personal.  We are born into an imperfect world where unfortunately “shit happens.”  It doesn’t discriminate between good or bad people.  Things just happen because “that’s life.”  (OK too many t-shirt slogans) I joke that it must be God who is tired of people asking, “Why did you do this to me.”  If anything, God is the ally, the friend who holds your hand through your trials and tribulations.  For me, he has served as a source of abundant comfort that I am not alone in this and because of these experiences we have developed a relationship that is beyond what I ever even thought possible.  But as my mother says, nothing bad comes from God therefore there is no one or thing to be angry at.  Sure, the circumstances can be frustrating and it’s ok to be angry at the circumstances or even to have thoughts about how “unfair” it all is.  But life is just not “fair.”   That things should or shouldn’t be fair is also a completely made up human construct.  Luckily I got over thinking life should be fair a couple of years ago (otherwise I would really be struggling now).  The trick here is to be aware and grateful for the life that we have, and to live it with grace and happiness by focusing on all that is good in our lives.  Too often all we can see is “the tumor” and we miss everything else.  Ironically it’s the “everything else” that God is trying to gift us with and we just miss it.

When this all began my mentor said to me that the reason I assign to having this experience in my life will make a difference.  I told him that what jumped out at me was – “Why not me.”  I already knew that I had all the support and resources that I needed to get through this so if “the gods” had to assign this to someone, I was certainly the ideal candidate.  Even then I could find it in me to be grateful for the fact that I knew ultimately I would be a better clinician (I’m in a doctoral program – currently on academic leave – in the hopes of one day becoming a psychologist) for having had these experiences.  I feel humbled and appreciative that I will be better able to help and serve others because life has granted me this “opportunity.”  The irony that something so wonderful could come out of something that seems so miserable (and scary – remember I’m a big scary cat) brings a smile to my face.

As a side note – this is not to be confused with “God’s mysterious ways.”  As my astute friend noted last week, if the big guy is responsible for all that happens in this world, then he’s responsible for all the children that are born into poverty and die for reasons unfathomable in this country.  His exact words were, “That wouldn’t make him mysterious; it would make him a big jerk.”   Wisely stated I thought.

So my friends, there you have it - the good, the bad, and my thoughts of it all.  I am thankful for the good and I have strength, conviction, and the incredible support system of all of you to get through everything that shall eventually come to pass.  Again thank you for your thoughts and your prayers.  I have no doubt that they have made an incredible difference throughout this journey.  I am asking that you please continue them.  I draw on them and on your wonderful words of wisdom and encouragement to keep me going.  I’m a fighter through and through but every fighter needs their support team.  You are mine and I am truly blessed for having you in my life!

Sunday, May 15, 2011

The Eye of The Storm

In Florida we have hurricanes.  Usually they are storms that consist of strong winds and rains and they can do much damage to the cities and towns they pass through.  When a hurricane is seen via a satellite view it tends to be circular in shape and it has a hole in the center where there is nothing but calm.  We know that a hurricane is well defined when the hole in the center, also known as the eye of the storm, is clearly visible and all the activity is moving around this eye.

If you have ever experienced a hurricane then you probably know that the power in your home will most likely go out at some point during the storm.  Luckily these days many people have generators which allows them to keep watching the television news for the latest updates on where the storm is, particularly where the eye of the storm is heading.  If you've never experienced a hurricane, you might be wondering why you would want to know where the eye is, if that is the calmest part of the storm.  The reason is that the most violent and destructive part of is found surrounding the eye.  Unfortunately before the days of generators, when everyone lost power, there was no way to tell if the storm was over once the noise of a high pitch scream was over (that's what hurricanes sound like) or if you were in the eye of the storm and there was still the second half of the storm coming to pound over your home and neighborhood.  Many people were hurt or injured because they would leave their homes to assess the damage or simply out of curiosity.  Even people that knew they were in the eye of the storm (because they had a battery operated radio or TV) would often wander outside.  The eye brings a calm that is alluring and it creates a false sense of security.  Many dangers lie outside even when the winds and rains stop.  Power lines are usually down and oftentimes in puddles where you could be electrocuted, trees have become weak and could fall at any moment, the roads are filled with debris that you could step on and hurt yourself with, etc...

You're probably wondering why I'm going on about hurricanes.  Simply put, I have no idea if I'm in the eye of the storm or if my "hurricane" has passed through.  Earlier this week I woke up feeling good.  I have had days where I wake up feeling better than bad, but feeling good was something that I had forgotten what it felt like.  As you can imagine, I was very excited.  My father picked me up to go to physical therapy and I told him how I was feeling.  I was walking with a little extra bounce in my step having no clue that I would soon receive a phone call that would alert me that instead of having my rainbow close by, I may have stepped out in the eye of the storm.

The week before last my pain doctor ordered an MRI. My radiation oncologist was glad for this because he still was confused about where all my pain was coming from (we solved that problem...but not with the MRI - that's another blog, another day).  The neurosurgeons thought the MRI was a complete waste of time.  After all, I had an MRI in February, we knew the tumor was swollen and the only way to assess if the radiation was working was to wait a couple more months and compare MRIs then.  Well, it turns out that this MRI, a quite crappy MRI truth be told (because it was done without contrast) opened up a can of worms that we could never have predicted.  Of course my neuro-otologist wanted to look at the MRI once we walked into his office (they just can't help themselves) and what he saw both on the MRI and upon examining me was that the tumor may have grown some more down my neck.  I asked the doctor if this could be swelling and he very specifically told me that no, this would be new tumor growth.  My neck area was never radiated so the growth down the neck has nothing to do with the effectiveness of the radiation.  In fact, we know for sure that the tumor has responded in some ways to the radiation.  First, it's swollen; that in and of itself is a response.  Also, when the tumor is viewed through my ear the tissue no longer appears red.  It is white and "dead" looking.

My neuro-otologist also suggested that there is a small possibility that it is the blood clot that has grown or shifted in shape but more than likely it is the tumor.  That week and this past week as well, the tumor board met once again to discuss my case.  UM doctors (neurosurgeons, radiologists, neuro-otologists, etc) weighed in on what they thought was going on with me using this latest MRI.  The consensus was that more than likely we are looking at new tumor growth and due to the location of the growth, surgery would once again not be a viable option.  The treatment, if they are correct about what is transpiring, is more radiation.  The hardest thing for me to deal with during this time has been the pain that is associated with my mouth and eating.  Radiation to the neck also mean radiation to the throat which causes ulcers in your throat that make it very difficult to swallow.  If the case is that I will require a second round of radiation, then I am currently standing smack in the middle of the eye of the storm.

This coming week blood will be drawn, nuclear scans will be taken, my body will be checked for more tumors, doctors will be met with, and a discussion about a biopsy will be had.  To date, there has never been a biopsy because we have been almost positive that we are dealing with a certain type of tumor called glomus tumor and a biopsy carries a very high risk of excessive bleeding.  Although my tumor has always been a highly a-typical glomus tumor, there are still certain characteristics that glomus tumors have in common.  One of them happens to be that they are extremely slow growing.  If there has been growth from the start of my radiation (when an MRI showed no tumor in the area where there might currently be a tumor) to now, we may be dealing with some other type of tumor.  A biopsy is a scary thing for me especially after being told that I could bleed out on the table if we do one.  We know that the biopsy would be done through my ear (which appears to not have tissue that has a high blood supply)  but my doctor, who assures me that it is safer now, still would do the surgery in the hospital so that he can control the bleeding if and when that occurs.  If he's concerned about bleeding, I am too!

My current condition is much improved but not knowing what lies ahead scares the you know what out of me! The truth is I can't dwell on it.  If I do, I go to scary places in my mind where one should not wander alone.  Instead I am doing everything I can to be grateful for this time that I have been given.  I feel good, my appetite is returning, the amount of narcotics I take has been drastically reduced, Nate and I are actually doing normal things such as going to the beach, movies, and dinner on the weekends, and I am spending quality time with friends and family.  While it's only been a week of feeling this way, you gotta celebrate the victories, no matter how small or how short lived they might be! 

Thank you my friends for all of your prayers and support.  I know that there is a direct correlation between the way I am currently feeling and the energy that I have to your thoughts, prayers, and the healing energy that you have sent my way!   Please continue to pray that the doctors make the best decisions they can with the tools that they have and that I can be strong for whatever lies ahead.  Most of all pray that my chickenitis (I self-diagnosed myself with that) gets under control so that I can be as strong for round 2 (if there is one) as I was able to be for round 1.

Wednesday, April 27, 2011

A Cry Baby Emerges

I’m sorry I’ve gone “radio silent” for a while.  I’ve been having a difficult time coping with pain, fatigue, nausea, and a complete loss of appetite that has resulted in frightening my family significantly due to my weight loss.  Who knew that the elusive and yet highly coveted short cut to weight loss is just a little bit of radiation!  I have been trying to do a bit more lately as well.  I’ve started to work full time again.  It’s an interesting thing because I have to stop every couple of hours to nap and recharge.  I also started physical therapy today.  My physical therapist seems very nice and he feels optimistic that we can make some good progress.  Meanwhile my pain doctor is interested in trying botox to paralyze my jaw and neck muscles in the hopes that the very painful spasms in those areas will stop.  Some of my docs are skeptical, but I guess at this point anything is worth a shot.  He also ordered an MRI that I had done yesterday.  We don’t expect to see anything significant with the tumor but I’m curious to find out what is happening with all the liquid that is in every space in my head.  I have a theory that it is responsible for the pain that I feel anytime I’m in a slightly cold (what would seem comfortable to most) environment.  I also saw a maxial facial surgeon yesterday.  He wants to consult with my neurosurgeons and pain doctor to see if a surgery that would release a tendon in my jaw and saw down a bone is worth doing in order to get me to be able to move my temporal mandibular joint some more.  Tomorrow I have to draw some blood to make sure my blood thinners are at the appropriate level and Friday it’s time for the experimental shot again.  Never a dull moment! 
I wrote the following section of a blog a couple of days ago but was unable to finish it.  I have more to say on the subject and I promise to continue in another blog.  For now I just really wanted to update everyone and put something up. 
To describe myself as sensitive lately is an understatement.  I’ve developed this new and highly embarrassing habit of crying at the drop of a hat.  I cry when I’m happy, sad, nervous, frustrated, grateful, feeling loved, etc.  What’s worse is that it seems as this is one more thing I have no control over.  Luckily I have yet to full out lose it in a public arena. Usually only one or a handful of people at most are witness to my tears.  I associate crying with “something’s wrong.”  When I see someone crying, I want to console them.  I also think of myself as having a public persona of someone that is “put together” and cool, calm, and collected.  The inner me is not nearly as put together or as cool, calm, and collected as the outer me.  As I tell my friends, who ask me how it is I always seem so confident, “You just fake it till you make it.”  I’ve been successful because I trust my outer persona.  I believe that she knows what I’m doing even when inside I’m scared and full of doubt.  But how in the world do I cope when my outside persona has now become a ball of emotions that all culminate in the same external response – crying.  I’m not sure of the answer yet because so far what I’ve been doing to cope is (you guessed it) cry!

Tuesday, April 12, 2011

Updates, Acknowledgements, and A Request For My Tumor

Last week I went to go see my new pain doctor.  What a different experience from Dr. Strange!  He was everything that I hoped he would be and he gave me hope for what lies ahead.  He did tweak some of my medications and gave me some more tools to try and help with pain management.  Most importantly though, he took his time (he spent an hour with me), explained things at length, and he made a follow-up appointment for next week (and told me to please feel free to go in or call him if the need arose).
Unfortunately the very next day I felt frustrated because I was in my usual pain.  My radiation oncologist tells me that on his lab coat it says M.D. not GOD.  He's right.  There are no simple answers for what I'm experiencing.  In fact, it's mostly a guessing game as to what will work because there are so little patients to compare my case to.  But when I see a new doctor, there is so much hope in me that all my pain will disappear.  Of course this is an unrealistic expectation so I experience a letdown.  Well to be honest the day after I saw my new pain doctor I had a little bit of a meltdown.  I was on the phone with Ili crying because I couldn't even eat a small piece of watermelon without experiencing a significant amount of pain in my jaw and throat.  I just keep trying to remind myself to roll with the punches and that this too will pass!

Yesterday, I had my first follow-up visit with my radiation oncologist since my radiation treatment ended.  I call him Dr. Teddy Bear.  He is wonderful!  He's always cracking jokes and making everyone laugh but what really shines through about his personality is his love for his patients.  He doesn't know why I'm feeling all of the pain I'm feeling and he has hope that the new pain doctor will be able to get some answers.  He suggested that we look into ordering another MRI to check and see if the fluid surrounding my tumor has increased.  Perhaps there is a way to drain the fluid and alleviate some of the pressure that I feel when I lie down.  I'm currently dealing with a catch 22.  My body requires a lot of sleep but the sleeping position causes more pain.  Most nights I'm up between 3 and 5am and running to take a hot shower in order to alleviate some of my pain.  I usually get at least 1 or 2 nights a week when I get a full night's sleep (like last night) and I'm always extremely grateful for those!  Dr. Teddy Bear hypothesizes that the heat of the shower may help bring down the inflammation that is currently occurring due to the radiation effects.  Whatever it is, the hot showers work.  I joke that I'm the cleanest girl in America because I take 3 - 5 showers daily.  In addition, my professor/mentor (we'll nickname him Dr. Mentor) has taught me some excellent new breathing techniques that relax and sooth me as well as give me a little extra energy.  I don't have nearly as much energy as I'm used to so any extra bit of energy comes in extremely handy.  I also listen to an audio track he made for me to help with pain management.  It is a wonderful tool in my pain management box!  Between the narcotics, breathing, showers, audio tracks, and the excellent support system I have you would think that I'd be pain free.  Unfortunately I'm not.  The truth is I get frustrated quite often but at the same time I'm ever so grateful for the support system and the wonderful team of doctors that are always searching for answers even when they keep coming up with more questions. 

Oh tumor of mine, I have always considered myself a pretty patient person, but you are teaching me lessons in patience beyond what I thought were possible.  In addition there’s the overwhelming gratitude you have filled my life with.  My family and friends; Dr. Teddy Bear – which looked at me with watery eyes yesterday and told me, “Please take care of yourself, I worry about you;” Dr. Mentor, who checks in with me, teaches me new relaxation and pain management techniques, and has gone above and beyond for me during this whole process; Dr. neuro otologist who tells us to call his cell phone anytime we need to; Dr. Endocrinologist who is trying an experimental treatment on me and responds to my emails (with 10 questions) minutes after I email him; friends of a friend that pray for me weekly and met last week and prayed over me in such a special and moving way, friends of my parents and of m friends who are constantly telling my friends and family that they are thinking of me and praying for me.  I would not have been privy to this kind of awareness of the love that exists in my community and extended community without you tumor.  I can’t thank you enough for all of this!  But please please please know that you have done your job, the gifts you have given are not lost on me.  It’s now time to stop swelling and to start shrinking.  Thank you in advance for listening to my request my stubborn (I mean wonderful) tumor! 

Saturday, April 2, 2011

A Disaster of A Doctor's Appointment

Earlier this week I had an appointment with a pain specialist.  I'm still having a difficult time controlling my pain so I had a great deal of hope that this doctor would be able to help me.  What happened during the appointment left my family and I almost speechless.  In fact, we (my mother, father, Nate and I) left there happy and smiling.  The next morning, after we had time to process what had transpired, we realized that the appointment was not only a disaster, it trumped the appointment with Dr. No Bedside Manner (an earlier blog I wrote in January).

The appointment was scheduled for 2:30 in the afternoon.  We arrived at 2pm (as instructed) and were told that the doctor was running about an hour behind.  We smiled and told the nurse that it was no problem and we were happy to wait.  After all, we have been to enough doctors to know that a little bit of a wait is just part of the process.  Three hours later my parents are starting to get anxious that we are still in the waiting room.  After four hours, they call me to have my blood pressure taken.  There was a patient who had been waiting for a long time as well to see the same doctor and he became agitated to the point where the doctor came out to speak with him.  This was my first glimpse of 'Dr. Strange' (my new nickname for him).  From where I was sitting I could see the interaction between the patient and the doctor perfectly.  The patient is explaining that he is a diabetic and he needs a certain shot and he's been waiting for hours already.  Dr. Strange offers to move him into another waiting area and informs him that he has other patients waiting and if moving to another waiting area doesn't suit him, he can come back another day.  The response from the doctor was far from apologetic, it wasn't even empathetic.  But what was particularly bothersome was the smile that Dr. Strange had on his face.  It was a wide, teeth showing kind of smile; completely incongruent with the situation at hand.  To say it was inappropriate is an understatement.  I say to myself, "He's a little weird, but if he's a good doctor that takes away my pain, I'll wait the 4 hours and put up with the odd smile any day."

Next, my parents and I move into a room and we are seen by the physician that is the fellow working with Dr. Strange.  A fellow is a doctor that is specializing in a particular field of medicine.  Dr. Fellow was great.  He listened carefully, grasped everything that we said, made some great suggestions, and looked at the tumor inside my ear.  He happened to know my mentor and asked how I knew him. I told him that I was a student of his in the doctoral program at CAU.

About 20 minutes later Dr. Fellow and Dr. Strange both enter the room.  Dr. Strange still has the creepy smile on his face.  Dr. Strange greets everyone in the room  and then he says to me, "So you're a psychologist."  I tell him no, I'm a psychology student.  I realize that he either spoke very little to Dr. Fellow, or he just doesn't listen when people speak.  Throughout the visit he kept referring to me as a psychologist.  I conclude that he's just not a very good listener.  At one point my dad and I say something about psychologists and insurance and I say how that's a double edge sword.  Dr. Strange responds by saying, "Yeah, every time I see a psychologist I pay them in cash; try to help the poor guys out a little bit."  I had no idea what he was trying to communicate so I said nothing.  But looking back I speculate that he might have been saying he views psychologists as charity cases?? Seriously!? (Side note to mentor - I can't believe I forgot to tell you that one!!)

He starts the consult by asking what happened, what medications I'm taking, what's happened since radiation etc.  He then asks how many Percocet I'm taking and I tell him that it depends on my patch day.  By the third day of the patch I'm taking 1 percocet every 2 hours.  He askes, "How many is that?"  I tell him, "Well, it's not really exactly like that because at night I don't take 1 every two hours."  Meanwhile he is interrupting me asking how many is that over and over again.  Everyone stays quiet for a second - we're all confused that he can't do the simple math.  I then say 12 but really it works out to about 9.  He concludes that I'm taking too much Tylenol.  When I tell him that while I was hospitalized I was taking 2 Percocet every 4 hours (I'm trying to communicate that none of the doctors had a problem with the amount of Tylenol I was taking), he asks, "How many is that?"  After skipping a perplexed beat, I say, "The same amount."  He responds by changing the subject and says, "Maybe we should give you a dose of 50mg for the patch." About a minute before this statement I had explained to him that my oncologist told me to try two 25mg patches if one didn't give me full pain relief.  I overdosed on the two patches.  Clearly simple math is not Dr. Strange's forte.  My dad reminds the doctor that I overdosed on the 50.  Dr. Strange (perhaps slightly embarrassed, but still smiling freakishly) says, "Well we want to keep doing what is working." Someone should tell Dr. Strange that patients see him because whatever they are doing is NOT working!  So he then suggests switching the patch to every other day instead of every third day and switching the Percocet to 1 every 4 hours (a lower dose of Percocet than I've been on for a very long time).  Before I could digest the information, he asks, "What does the tumor look like?"  I tell him that it is the largest my physicians have ever seen for the type of tumor they believe it to be and it's amorphous in shape.  He then says, "Is it like a golf ball?"  Everyone in the room stays quiet for a couple of seconds.  Most people do not come up with the image of a golf ball when you say large and amorphous.  I respond with a description of how it goes from the base of my skill to my eye balls without actually reaching my eyes, down my neck, and out through my ear.  Dr. Strange then goes on to explain how there is not a particular pill for a large and a-typical glomus tumor.  We all just stare at the doctor wondering if he's trying to make a joke.  He continues to say that he's going to start me on a medication specifically for nerve pain.  Dr. Fellow has already explained that this medication does not work like Percocet or other medications designed for acute pain.  It needs to be monitored and titrated for the patient.  Dr. Strange doesn't mention anything about titrating the dosage.  Next the doctor wants to look in my ear to see the tumor.  I notice that he doesn’t place the sterile cap on the equipment.  He takes a look without actually placing the device in my ear.  I know that the tumor is deep and there is no way to see it without actually placing the device into my ear.  Dr. Strange says nothing about the tumor but he asks if anyone has tried to remove the wax (which is all he saw).  I tell him no, that we have seen several ENT specialists and they have all insisted that we not touch anything inside of the ear – BECAUSE THERE’S A TUMOR (with a large blood supply) IN THERE!  While Dr. Strange is pretending that he saw the tumor and digesting that his patient just stated the obvious, I ask him when he thinks I will be able to return to my "normal life."  The medications make me drowsy and my mind is not as sharp as it normally is.  He completely dismisses my question and tells me that he doesn't even tell patients that they can't drive on Percocet.  He states that these medications don't have any effect on cognition.  As someone who is experiencing the effects of these medications, I can assure you that the medications affect my cognition.  I can tell that pursuing this course of conversation is not going to get me anywhere with Dr. Strange so I drop it.  He then prints the prescriptions and shakes everyone’s hands goodbye.  As he's doing this he says, "It's always nice to have someone with you when you come, but maybe not all these people."  My father then notices that he's wearing a little girl's picture on his lab coat and asks if it is his daughter.  He says, "Yes, do you have any more children?"  My father responds, "I have 5, this is my oldest."  Dr. Strange then says, "Damn Catholics!"  His response was so out of left field that we all laughed.  But looking back it was highly inappropriate.  Then, I ask the doctor, "When do I see you again? Do I need to make an appointment."  His response was, "Well, don't be a stranger."  We left there without a follow-up appointment.

The next day I had individual conversations with my parents and Nate asking them what they thought of the appointment.  Everyone agreed that it was a disaster.  Dr. Strange was beyond odd.  We had a good laugh reminiscing about the crazy things that had come out of this guy's mouth and his inability to do simple math.  We wondered why we had left there happy and smiling and concluded that it was just so shocking and we had been worn down after 4 hours of waiting.

I'd be a hypocrite if I didn't consider that Dr. Strange may have just been having a particularly hard day and while most doctors would have canceled their patients for the day, he was considerate enough to keep his appointments.  I don't know what the events of Dr. Strange's day were that led up to my experience at that appointment.  I wish Dr. Strange the very best and hold nothing against him.  But the bottom line is that I simply can't trust Dr. Strange with the one aspect of my condition that largely controls my current quality of life.  The day after I saw Dr. Strange I made an appointment with another pain specialist.  I am seeing him this Wednesday.  Fingers crossed that the consult goes much better! 

I thank Dr. Strange for providing me with a good story to tell and I thank my parent’s and Nate for being there with me as my witnesses.  Otherwise I don’t think anyone would believe this craziness!