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.