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Saturday, December 12, 2015

I AM GUESSING IT IS TIME FOR SOME EXPLANATIONS SINCE I HAVE NEGLECTED TO DO SO IN A WHILE

I have to admit that though the Holiday Party took a lot out of me, it was so much fun.  I had waited to until they were done performing to tell a few of the performers that are very good friends what was going on with me.  I did not want to take a chance and  put a damper on the performances. We had a great time though with the best outfit theme (thank goodness I was ready before hand so I could just change outfits with the theme)  Unfortunately my wonderful friend Mavenn was not feeling well so she had to cancel.  Toxie also had become sick and my friends from the north stepped in Krisie Snowdrop.  Parker and Krisie I truly apologize for not getting a chance to take a picture.Here are a few pictures showing some of the fun:
Still during formal competition

David Csizer with the ugly sweater competition

Eliza Wantanba dressed for Christmas fun

Laidback Celt hosting best Santa's helper competition

Larry the Panda

Max singing All I want for Christmas to Santa

 
Russell Eponym hosting formal Christmas competion





Now for the hard part of the explanation.....I really hate it when I share health issues, but you have all been so wonderful to me time and time again, that I owe you one instead of just disappearing without a word.

Due to the oncologist I had actually liked, leaving Northwestern to take a job with the dreaded pharmacuetical companies, I received another.  As angry as I initially was that the dr who had finally offered answers was gone, it turned out to be a blessing in disguise.  This new oncologist paid attention to things the other had overlooked and ended up doing more scans including a pet scan.  Before he even had the written report and just the images he took them to a team of oncologogists.  Had my transplant dr on the phone with them.  The mass that the original onclogist had overlooked when the ENT tried to bring it to his attention decided to grow rapidly....in 3-4 months it had grown from my nasal cavity back to my mastoid bone (for those that aren't aware, it is the bone behind your ear)due to the failing organ chemo was still out and radiation was called for as it was at the point they nicely called severe.  While I was on the phone with him (fastest I ever got test results back, it was less than three hours after the scan.)  The radiation oncologist was calling me to get me in.  The doctor actually received the written report while on the phone with me and it was confirming all he said.  I was in to see the radionton oclocgist that same week and the following Monday back there to have another CT scan and a mask made ...giggles now that was a strange experience, though they had made me take twice the normal of meds I take for the shellfish allergy so I was really sleepy and just confirmed they have a crazy woman on their hands.  You know how in the exam room they always knock before entering.  Well I had dozed off and must have been dreaming...when they knocked I promptly said be there in a second and then told (actually yelled at her) my dog to hush and go to her kennel.  I guess you never know what I may pop up with.  So I ended up dozing while they made this really strange mask.

They wanted me to start right away but with Christmas being that same week and my kids all headed home, I asked if it could wait until after Christmas.  I wanted to be able to hold my granddaughters.  I just don't see them often enough.  So I was scheduled to start the 27th.  Just as I was getting in the car, the phone rang, it was the drs office telling me the insurance company denied it and the dr had tried to appeal it the day before, but they gave him a runaround and a few numbers to call.  Needless to say I was livid.  First it took a lot to psych myself up for this then to have that burst.  I very rarely vent on FB but I did that day.  Thank goodness I did, a very good friend gave me a link that helped.  I followed it exactly and by Thursday morning I was approved.  They actually had approved the radiation itself, they had not approved the way the dr wanted to do it. As I learned, he wanted CT guidance and IMRT.  not knowing what they were though one speaks for itself....I googled the other, it is a form of 3D much higher dosage radiation so that it focuses copletely on the target an nothing wurround it,  Knowing the position this mass was in and that its next step if it gets through the mastoid is my brain, this made perfect sense to me.  There is too much in those areas that can be affected.  I owe a huge amount of debt to the friend that gave me that link,  Also just so that friend is aware, the doctor's office said they were worried it would not approved that fast and that they wish all patients were as proactive.  In thinking about that, I posted the link on FB, who knows if it helps one person then it was worth it.

This is why I have been so absent, I did not forget you, I never could; you all mean way too much to me.  I have no idea how I will be feeling over the next few weeks as I am starting this tomorrow.  but I am taking my laptop with me (I am staying in a hotel right across the street from the hospital, chuckles if you know Chicago and know the magnificent mile, I will be in the lap of luxury, hoping I can enjoy it)  Its running me a fortune, but a three hour drive each way, not sure how long the weather will hold, this was the best option.  Nowq if I could only sell mny first born....laughing.  I have to admit I have two land companies in sl, both Winter for my sim and SK for my house.  Both have been so very understanding, I could not thank you enough.    Sooner or later, I will back and 100% again, ready to put together the spring prom, and Stand Up 2 Cancer 2016.

This also showed me exactly why I love Stand Up 2 Cancer.  It is truly about the research and finding the answers.  Where as pharmaceutical companies and Insurance companies (the name Aetna is like cussing in my house lately) are all about the money and victimizing people over and over again.  Thank goodness I am am fortunate enough to have such wonderful doctors with a hospital that has gone through hoops and fought them every step of the way in my behalf.







2 comments:

  1. Thank you for this update, Still. I am so happy to know that as you deal with your health needs you have kind and excellent physicians watching over you. I know how invaluable they can be - both for diagnosis and treatment AND for the caring delivery of the best medicine has to offer.
    I so admire your graciousness in dealing with the insurance companies - and your ongoing commitment to your health and happiness. Add to that your incredible and very talented dedication to your work in SL (both with BS's AND Stand Up 2 Cancer!), and you step way over the threshold into AMAZING.
    That's not new. I remember being struck by your organizational skills and the depth of your involvement in fighting cancer - way back, even before we had a venue. We attended an event at BS's in our early days in SL and were just blown away by your work there to bring people together to make a real difference.
    Thank you for all of it, Still...and for your warm and lovely friendship. What a great sense of humour you have - always a stellar part of what you offer as a friend. Those "chuckles" of yours have gotten me through some dreary days, my dear, and have made many a bright day even brighter.
    Thank you for keeping everyone posted on what's happening. MOST IMPORTANT: Thank you for taking good care of yourself. Please let us support you. You have many loving friends in SL as well as RL, and I'm sure I am not alone in wanting to be as present for you as possible as you take this next step in your health care. Please let us know what you need. You'll be hearing from me in-world shortly, with some thoughts I have about that - but you're the boss, so focus on your treatments and remember that we are here...rooting you on and keeping you close in thought and prayer, and at the ready to help in other ways as well. (More on that soon!)
    Warm hugs and loads of love,
    Mireille

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  2. Mire, You are a wonderful person and your friendship and support is more than enough. There is nothing more valuable than the friendship you have given me.....well come to think of it chuckling....ya know if you ever chose to take me on one of those wonderful holidays with you and Aeon, now as I have told you before, I make a great stow-a-way.

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