Monday, June 20, 2011

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.

Thursday, June 16, 2011

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.

Saturday, June 11, 2011

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 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!