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!


  1. Hi Maria....You Acceptance and recognition of your current situation is amazing.I want you to know that i ve prayed for you. I am sure you meditate i am gonna send you this meditations. is beautiful listen to it....I ll keep you in my mind and i ll send healing energy your way..muahh miss you hope we can c each other is the links of some meditations that i know it will help you if u ever feel down...this are beautiful

    Just copy and paste

    The healing spirit of God is active within me, restoring energy and vitality.

    As I continue in this prayerful state, my mind is peaceful, my body is relaxed, my heart is filled with joy in the knowledge that Your spirit, God, is active within me. I relax even further now, resting in an awareness of Your healing spirit—a powerful and constant presence.

    I am Your divine creation. You created me to live in peace and wholeness, to experience energy and vitality. I am enlivened by this sacred truth and awakened to Your spirit of wholeness.

    Every part of my body is infused with Your glorious spirit. I feel it energizing me, revitalizing me, and filling me with a sense of peace.

    Certain that healing is taking place within me and those I pray for, I breathe in Your life-giving spirit and feel Your healing activity deep within as I return to the silence of prayer …

  2. Dear Tati: I do not know who you are ...BUT I love you and thank you !....Love and prayers for you and your family Mari's step mother