Tuesday, April 12, 2011

Updates, Acknowledgements, and A Request For My Tumor

Last week I went to go see my new pain doctor.  What a different experience from Dr. Strange!  He was everything that I hoped he would be and he gave me hope for what lies ahead.  He did tweak some of my medications and gave me some more tools to try and help with pain management.  Most importantly though, he took his time (he spent an hour with me), explained things at length, and he made a follow-up appointment for next week (and told me to please feel free to go in or call him if the need arose).
Unfortunately the very next day I felt frustrated because I was in my usual pain.  My radiation oncologist tells me that on his lab coat it says M.D. not GOD.  He's right.  There are no simple answers for what I'm experiencing.  In fact, it's mostly a guessing game as to what will work because there are so little patients to compare my case to.  But when I see a new doctor, there is so much hope in me that all my pain will disappear.  Of course this is an unrealistic expectation so I experience a letdown.  Well to be honest the day after I saw my new pain doctor I had a little bit of a meltdown.  I was on the phone with Ili crying because I couldn't even eat a small piece of watermelon without experiencing a significant amount of pain in my jaw and throat.  I just keep trying to remind myself to roll with the punches and that this too will pass!

Yesterday, I had my first follow-up visit with my radiation oncologist since my radiation treatment ended.  I call him Dr. Teddy Bear.  He is wonderful!  He's always cracking jokes and making everyone laugh but what really shines through about his personality is his love for his patients.  He doesn't know why I'm feeling all of the pain I'm feeling and he has hope that the new pain doctor will be able to get some answers.  He suggested that we look into ordering another MRI to check and see if the fluid surrounding my tumor has increased.  Perhaps there is a way to drain the fluid and alleviate some of the pressure that I feel when I lie down.  I'm currently dealing with a catch 22.  My body requires a lot of sleep but the sleeping position causes more pain.  Most nights I'm up between 3 and 5am and running to take a hot shower in order to alleviate some of my pain.  I usually get at least 1 or 2 nights a week when I get a full night's sleep (like last night) and I'm always extremely grateful for those!  Dr. Teddy Bear hypothesizes that the heat of the shower may help bring down the inflammation that is currently occurring due to the radiation effects.  Whatever it is, the hot showers work.  I joke that I'm the cleanest girl in America because I take 3 - 5 showers daily.  In addition, my professor/mentor (we'll nickname him Dr. Mentor) has taught me some excellent new breathing techniques that relax and sooth me as well as give me a little extra energy.  I don't have nearly as much energy as I'm used to so any extra bit of energy comes in extremely handy.  I also listen to an audio track he made for me to help with pain management.  It is a wonderful tool in my pain management box!  Between the narcotics, breathing, showers, audio tracks, and the excellent support system I have you would think that I'd be pain free.  Unfortunately I'm not.  The truth is I get frustrated quite often but at the same time I'm ever so grateful for the support system and the wonderful team of doctors that are always searching for answers even when they keep coming up with more questions. 

Oh tumor of mine, I have always considered myself a pretty patient person, but you are teaching me lessons in patience beyond what I thought were possible.  In addition there’s the overwhelming gratitude you have filled my life with.  My family and friends; Dr. Teddy Bear – which looked at me with watery eyes yesterday and told me, “Please take care of yourself, I worry about you;” Dr. Mentor, who checks in with me, teaches me new relaxation and pain management techniques, and has gone above and beyond for me during this whole process; Dr. neuro otologist who tells us to call his cell phone anytime we need to; Dr. Endocrinologist who is trying an experimental treatment on me and responds to my emails (with 10 questions) minutes after I email him; friends of a friend that pray for me weekly and met last week and prayed over me in such a special and moving way, friends of my parents and of m friends who are constantly telling my friends and family that they are thinking of me and praying for me.  I would not have been privy to this kind of awareness of the love that exists in my community and extended community without you tumor.  I can’t thank you enough for all of this!  But please please please know that you have done your job, the gifts you have given are not lost on me.  It’s now time to stop swelling and to start shrinking.  Thank you in advance for listening to my request my stubborn (I mean wonderful) tumor! 


  1. My dear Mari...I know you atribute a lot of what you've gained along this painful road to this tumor, but I want to remind you that your incredible inner strength comes from within you, from the essence of the amazing and unique soul that you are...Thanks one more time, for inspiring the rest of us by sharing your trials and tribulations with such strength, dignity and wisdom....just know and feel that YOU ARE LOVED.....Susy

  2. Hi Mari, wishing all the best for you and that your doctors have all the best guidance from god to help you for your soon recovery....our prayers are with you xoxoxoxo

  3. Hi Maria this is Tati from Bliss. I wanted to let you know that i just found out about what you are going through and I ll keep you in my prayers from now on. Remember that you are amazingly strong just by going through all that pain,keep your self positive, and do what it needs to be done to get better so we all can c ya soon. Everything is already in a divine perfect order for your greater and better good. xoxoxoxox I ll keep you in mind much love

    Tatiana Toruno

  4. Hi Maria, I am very sorry to hear about what you are going through. Please have a positive attitude everyday and do not think anything negative. I had the pleasure of spending time with you in Punta Cana, Dom. Rep. and I remember a very smart, charming girl, with such a playful character, but with a strong characters, so I am sure that you can get through this. You will be in my prayers and if I may be of service in anyway, please let me know.