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 7^th 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!

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!

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!

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!
 

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.

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.

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 ColorMySole.com 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!