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.