Getting On My Nerves

So I've been having a little bit of a rough time.  Friday night, out of nowhere, I get this very sharp stabbing pain in my ear - in my good ear.  It lasted 5 hours and then just as suddenly as it came on it went away.  But those 5 hours felt like an eternity.  The pain medication managed to take away all the pain I was feeling except for the ear pain.  I even took a full dose instead of my usual half dose in the hopes that it would knock me out; but no such luck.  There was nothing to do other than try to stay calm and ride it out.
Saturday was much better but I had an overall feeling of fatigue and a little bit of nausea.  My pain symptoms have increased lately especially to the right side of my face and my jaw.  It's difficult for me to open my mouth or chew due to the jaw pain.  Then there's the increased throat pain. It's worse in the mornings for some reason even making it difficult to drink water.  Also, my face must have swollen a bit - although it doesn't seem to be noticeable.  But my radiation face mask has gotten so tight that it leaves marks on my face.  My radiation team is going to adjust if for me on Monday.
All of this is to be expected.  The doctor told me this is all nerve pain and perfectly normal since the tumor is all over my cranial nerves and it's rebelling against the radiation by swelling up.  So figuratively and literally speaking this tumor of mine is getting on my nerves!  It stinks.  It's no fun at all.  But I'm alive and considering everything, I'm doing quite well. 
I'm feeling better today and the plan is to make the most of my day.  The doctor warned me that it would have to get worse before it gets better.  But he also said that the first two weeks would be the easiest.  Well I'm a week and a half in.  So I'm bracing myself for whatever is to come.  And I know that this will pass.  Everything always passes.  I tell my friends when they are struggling through something that in (insert a number of years - depending how big it is) they won't be suffering through this anymore.  The same is true for me.  One day this will be a memory and it will serve to remind me, my family, my children, and my grandchildren that they too can overcome the challenges in their life.

A Familiar Smile

Every Friday, while I'm doing my radiation treatment, I have to get my blood drawn to make sure my platelet levels are ok.  If they aren't, I just have to stop my treatment for a few days and wait for the levels to return to normal.  Last Friday was my first blood drawing session.  I went to the Lab Corp on the UM campus.  When I walked in, I noticed that one of the nurses looked familiar.  It turned out that she was the nurse who was going to be drawing my blood.  After we got in the room, I said to her, "I know you from somewhere."  It turns out that she also works at an OBGYN office and I used to visit that office when I was a pharmaceutical rep.  We caught up and made some small talk and then she asked me about "my situation." After I explained it all to her she says, "Now I know why I am here today."   She went on to explain that she never works at this Lab Corp but she had been asked to cover for someone.   Apparently she wasn't too happy that she had been moved around but my running into her had her day take on a whole new meaning for her.  She spoke with me and my mom for a while and told us how we would be in her thoughts and in her prayers.  When I asked her where she normally works, she told me she's usually in Miami Beach.  I said, "What a coincidence, that's where I live."  She asked me to please come by any Friday that I needed and she would be happy to see me and draw my blood for me. 
It was not only so nice to see a familiar face - especially to do my least favorite thing - draw blood.  It was so nice that I could alter the meaning of her day for her.  It's an incredible thing how we human beings add meaning to our lives and how that meaning has the capacity to alter our whole state of being.  I gave meaning to our having met at the Lab Corp too.  For me, she was sent there that day so we could cross paths.  And the fact that she works on Fridays just blocks from my home is wonderful!  Now, not only do I get to see a friendly and familiar smile when I go draw my blood, I also know it won't be so bad.  She did an excellent job.  I didn't even feel a pinch!  So tomorrow, I'll be a little more calm about drawing my blood and looking forward to catching up with her again!

Hello, I Have A Brain Tumor

After I saw Dr. No Bedside Manner I had an appointment at my school with the program director to register for the next semester.  He was running a bit behind and I was highly anxious.  I had booked the appointment 20 minutes before I was scheduled to take an exam for the most difficult class I was taking.  When I made the appointment, I had no idea what that day would have in store for me.  I had even waited an extra day to get the results of the MRI from the ENT because I wanted to be able to study for this test without anything interfering.  I had reviewed the images myself and although I did not know how to interpret them, I knew something didn't look right. 
About 10 minutes before my test was scheduled to begin, I was called in to the program director's office.  He greets me with a smile and says, "How are you?"  It was the first time someone had said those words to me since I had been told I had an inoperable brain tumor and it was a possibility that I would live with my current symptoms for life.  I wanted to answer something like, "I'm incredibly anxious because you're running late, I have a huge test, and oh yeah, I have a really large brain tumor."  But I was pretty sure he meant the question rhetorically so I replied, "I'm great.  How are you?"  I was out of there in 5 minutes and arrived to take my test just on time.
I took that test in slow motion.  I had no idea I was in slow motion but I found out when the professor said, "time's up."  I was in shock.  Where had the two and a half hours gone?  I turned in my test and said, "I didn't get to finish."  The professor very nicely said, "You'll just have to be graded on the work you did."  I wanted to cry.  I managed to leave the building and cry in my car.  It wasn't that I didn't know the material.  I more than knew the material.  I just couldn't concentrate enough to produce the kind of work that I would normally produce.  As it turned out, I did very well on the exam (but I could have done even better).
For quite some time, I have been what I call sensitive to the human condition.  I am in tune and empathetic to others feelings and I try to be responsible for the role I play in affecting others emotions.  But I have my moments.  You know those moments when people are just testing your patience.  When it seems like their goal for the day is just to make your life a little more difficult.  This changed the day I saw Dr. No Bedside Manner.  Now I have an even grater awareness of the fact that I have no idea what challenges people I encounter may be going through.  No one would ever meet me and think there's a girl with a brain tumor.  We don't wear labels stating the challenges we face.  This insight has taught me to be more patient and kinder with others - even when they aren't behaving the way I think is best.  What I believe about the human condition is that we all just want our lives to work out as best they can along with the lives of all of those we care about.  When someone isn't putting thier best foot forward, who knows what lies under the surface, what challenges and obstacles life has handed to them that they are battling with. 
As I was sharing this with a friend who felt slighted by the way someone had behaved with her she asked, "What if they're just a jerk."  I agreed that it was definitely a possibility but the other side of the coin was just as likely.  We usually get a small snap shot of others and we make judgements  about them based on a one time interaction.  What if I had been judged someone who just can't finish an exam based on the one incident? I told my friend that the truth is we can't control how other's will behave but we do always have a choice in who we "be" in the matter.  I choose to be more patient, more gracious, and kinder because I bet that even if we did wear labels that stated our challenges, very few people's would read...Hello, I'm just a jerk.

How To Comment On This Blog

Hello friends.  I have been getting many wonderful emails and facebook messages from so many of you.  I am so appreciative for all of your thoughts, prayers, support, and kind words.  I truly feel the love!  I have also been hearing that some of you aren't sure how to post messages on the blog so this blog is for anyone who has had this frustration.

First look on the top right hand corner of the blog and find where it says Sign In.
Click on that.
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IF YOU HAVE A GMAIL ADDRESS: type it in there and your password.  Next you will be taken to a page that you can use to set up a blog.
In the middle of the page in orange it says New! Add Blogs to your reading list.
Click Add and type in http://www.gracejoyandhealing.blogspot.com/
It will give you the choice to follow anonymously or to follow publicly.  Select the one that you would like.
Then the blog will be loaded on the right. 
Click on a title to the right.
Now you will be able to post on the blog.

IF YOU HAVE ANY OTHER EMAIL ADDRESS:  look on the bottom where it says, "Don't have a google account"  and click on Get Started (in blue)
Type in your email account.  Choose the password you would like to use to sign in (it does not have to be the same password that corresponds to that email account).
Fill in all required information and when finished click the orange arrow that says continue.
Next you will be taken to a page that you can use to set up a blog.
In the middle of the page in orange it says New! Add Blogs to your reading list.
Click Add and type in http://www.gracejoyandhealing.blogspot.com/
It will give you the choice to follow anonymously or to follow publicly.  Select the one that you would like.
Then the blog will be loaded on the right. 
Click on a title to the right.
Now you will be able to post on the blog.

Anytime that you go to the blog and you want to leave a comment, just make sure to click sign in on the upper right hand corner.  Type in your email address and the password that you selected and you'll be able to leave a comment.

I hope this helps.  Please let me know if you encounter any hiccups.  Thank you again for all your amazing support!

Radiation Magic

Radiation is a little like Disney World.  My first radiation session was on Wednesday.  I walked into Sylvester and the two people who were going to be doing my radiation greeted me.  They're as nice as can be and they explained to me how everything would work.  Then we walked into the room where if everything goes as planned, "dreams come true."  It's a fairly large room, with a large machine in the center of it.  The machine is completely open (not like an enclosed MRI) and it moves all around me but it does not touch me at all.  When I lay on the table, I'm covered with a blanket to make sure I don't get too cold.  They give me a donut shaped pillow to hold for comfort and make sure the pillow on my head feels comfortable as well.  I'm looking straight up to the ceiling.  The ceiling has a large circular cut out that is lit with a beautiful blue color and has fiber optic lights simulating the stars.  It's very relaxing and beautiful.  Music is also playing in the background and they joke with me that they promise to get better music for future sessions.  The music that was playing was Disney show tunes - think fantasia.  I thought it was great.  It really helped to set the mood.  Next my mask is put on.  The mask covers my entire face and shoulders and has cut outs for my eyes, nose and mouth.  The mask is strapped down to the table and is used so that I don't move my head or neck during the treatment at all.  Luckily I'm not claustrophobic!  When we are ready for the radiation to begin, I am left alone in the room.  The rooms has cameras and audio equipment in case I feel uncomfortable for any reason the radiation can be stopped and restarted once everything is ok.
During the radiation, I don't feel, taste, or smell anything out of the ordinary.  I lay looking at the stars, listening to music, and occasionally I see green and red lasers.  All the while I'm envisioning my tumor shrinking.  When the machine moves right above me, I can see my reflection.  I look funny with my mask on but I pretend it's my suit of armor.  The whole thing is over in 15 minutes.  It's so relaxing that I almost don't want to leave.  They really do everything possible to make it as pleasant of an experience as they can.
I'm scheduled to have radiation five days a week for the next 5 weeks.  So far, I've had 3 sessions.  I've experienced some side-effects due to the tumor swelling a little bit.  My doctor informed me that this is normal and to be expected.  I've been told that by next week I'll feel like my face and neck got a sun tan and in the following weeks it will feel like a sunburn.  I really have to be careful with sun exposure because my skin is extra sensitive to the effects of the sun right now.  I haven't lost any of my hair yet, but I've been told that I will start to notice it in the coming weeks.  I haven't really noticed any fatigue yet and I've had very little nausea.  Overall - so far so good.
Radiation treatment really is like magic.  Yes, the side effects may not be pleasant and it is possible that I'm in for some challenging times ahead; but if my tumor stops growing or God willing even manages to shrink, I'll always think of that room where my treatment was done as, "the happiest place on earth!" 

Unexpected Angel

This morning I was determined to be productive.  I made my to-do list and began to scratch things off.  Then I hit the part that said pay and discuss medical bills.  By ‘pay and discuss’ I meant work out a payment plan and find out why the insurance didn’t cover a portion of the bill.  This was probably my least favorite thing on my to-do list.  Medical bills and insurance issues are daunting and usually exhausting.  But I took a deep breath and made the call.  I was transferred a couple of times, and finally reached the person who could help me.  She said to me, “Oh, your name sounds familiar.”  I figured maybe she had just seen it in her files at the office.  After we spoke for a little bit we realized that we went to high school together.  It’s always nice to feel like you have a connection with someone when you’re trying to figure out a bill.  Then I told her I wanted to pay an installment and she said ok and then put me on hold.  When she came back on the phone, she told me that she would take this installment but the rest of the bill would be written off.   I wish I could have gone through the phone to give her a hug!  I thanked her (I think maybe about 10 times) and she said, “You’re so welcome, I can only imagine what you’re going through.”  I got off the phone so excited that I wanted to call everyone I know and tell them about my unexpected angel.  I have no idea if my old high school classmate ever comes across this blog.  But if you do, I want you to know that your random act of kindness totally made my day!  If we ever run into each other expect a great big hug from me!  I went to radiation and spent the rest of my day with an extra hop in my step and a grateful heart thanks to you – my unexpected angel for the day!

Gratitude Found at the Emergency Room

Monday morning I awoke with chest pains.  By Tuesday morning I was worried when it hadn't gone away.  After speaking with my doctor's office and being advised to go to the ER, I called my parents and Nate and we head to the emergency room at UM.  We had decided to go there since UM has all of my medical records.  Given that my radiation was scheduled to start today, we really wanted whoever treated me to be aware of my condition.  The scene at the emergency room looked like something out of a movie.  To say that it was very crowded and chaotic would be an understatement.  There was a woman yelling profanities in a corner because she was upset that a man in a wheel chair was blocking her view of the television.  There were people being taken in by fire rescue on stretchers and then dropped off in the waiting room onto a chair.  Then there was a little old lady that caught our attention.  She was crying because she had been there since 9am, all by herself, and although she had been seen by someone, her condition was not alleviated and she was not spoken to by any of the hospital staff.  It was 6:30 pm.  The hospital staff was not to blame.  They had their hands more than full and it was simply impossible to accomomdate all the patients that were in need of care.  As I was getting an EKG, my father and step-mother were trying to get the lady some medical care while listening to her story.  She told them how she was all alone in this world.  She has a daughter that lives in Cuba but they had lost touch.  She was lucky enough to get to an emergency room because a neighbor called the rescue for her.  Besides the fact that her legs were extremely swollen and she was in pain; she was afraid and she had no idea what was going on.  What she needed more than anything was someone to hold her hand and tell her that all was going to be well.  Unfortunately, we realized that we had to leave this emergency room because it would be many hours before I received any sort of attention.  But that little old lady stayed in mine and my family's thoughts all night.
When you are born into a family like mine, it's easy to take for granted how incredibly supportive they are.  When I called my parents to tell them that I was going to the emergency room, they dropped everything they were doing to meet me there.  They have younger children, another daughter that has a newborn with a fever, a mother with pain in her legs, a gym class to go to, a child's baseball game to attend, etc.  I know that they aren't sitting around waiting for me to call.  What's even more amazing to me is that I wasn't calling them to give them an update of my situation.  I was calling them, because I knew that they would want to meet me in the emergency room.  It's not that I mean to take them for granted, it's just that this is the way my family operates. 
As I was on my way to the emergency room at Mercy hospital my dad was telling me, "Listen you have chest pains; maybe you want to act like you actually don't feel so good so they give you attention quickly.  This is not the time to put on your brave face."  He made me laugh, but he was right.  Again I thought about the little old lady and wondered how differently her day at the ER would have been if she had someone like my dad by her side.  Then I thought of her again, while my blood was being drawn and Ili (my step-mother) and Nate had stepped out of the room and my dad knew my hand needed some holding.  Would the little old lady have been so scared and crying if she had someone to just hold her hand?
While I was at the hospital my mom, grandmother, siblings, aunts, uncle, and friends kept calling, texting, and even facebooking to see how I was doing.  Ili kept giving me updates on who was requesting updates and sending their well-wishes.  If I could have taken that little old lady with me, and shared some of my support with her I would have.  My parents were even thinking of going back to the ER at UM to drive her home if she needed! 
By 3am, my blood had been drawn, an X-ray and a CAT scan had been administered, and a blood clot in my lungs had been ruled out.  I was told that I probably have an infammation of the tissue surrounding the lungs; a condition that should get better within a week to 10 days.  I was given a pain killer and sent home.  As we left the hospital I again thought of that little old lady and my heart was filled with a sense of gratitude for the incredible people that are always by my side, always cheering me on, always pushing me to be stronger and better.
Thank you family for the late night.  Thank you for rushing to be by my side and holding my hand.  Thank you for calling to check up on me and worrying the way you do.  Thank you for making me laugh even when I'm in pain.  Thank you for the endless support, the long hours spent on google, and the comfort that your love brings! I love you!