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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.







HOPING YOU ARE ALL HAVING A WONDERFUL SEASON

ITS TIME TO PARTY!!!!

IT'S THAT TIME OF YEAR!!!!!


FILLED WITH LAUGHTER, LOVE, FRIENDSHIP, & FAMILY

IT'S CHRISTMAS!!!!!

BS's Would not be BS's without a party to celebrate the most wonderful holiday of them all.  This year we are adding themes...With best dressed for men and and woman based on the theme of the hour.
12:00pm--1:00 pm  Mavenn-- best fun Christmas
     1:00pm – 2:00pm   David Csiszer  - best ugly sweater
     2:00pm – 3:00pm   RUSSELL EPONYM -- best formal Christmas
     3:00pm – 4:00pm   Laidback Celt -- best Santa's helper
     4:00pm – 5:00pm  SAVANNAH RAIN -- best country Christmas
     5:00pm – 6:00pm   Eliz Wantanabe -- best fun Christmas
     6:00pm – 7:00pm   Toxie -- best rock in Christmas
     7:00pm – 8:00pm   Maximillion Kleene -- best fun Christmas
     8:00pm – 9:00pm   Parker Static -- best formal Christmas
    
     So have those outfits ready....there will be gift certificates and lindens won each hour.

While you are visiting, cross the candy cane bridge into Santa's land, visit the nativity, go ice skating, dance in the ballroom the venue's stream will be playing there, tp up to the winter wonderland amusement park.  It's Christmas at the shore!!!!

Sunday, December 6, 2015

FINALLY BACK IN WITH EXPLANATIONS

Well I guess it s time for some explaining to be done.  So much has happened.  First and foremost, I need to apologize.  After the SU2C fundraiser, it took a while for me to bounce back, adding into that health that decided to flare up.  Just as I was starting to bounce back, It was time for me to meet my oncologist and learn whether I could do chemo, get this into remission and get back on the transplant list or not.  That led to a complete fall into depression and frustrations.  It turns out the oncologist that was so willing to work me, has taken a position with a pharmacuetical firm and when I went into see him, he was there but his mind had already moved on.  He made me question if I even had lymphoma and do I really want a transplant..  Talking about the quality of life, etc.  Anotherwards, the answers I waited 6 months and drove 3 hours during a snowstorm to get went completely out the window.  Needless to say I was in tears on my way home. He told no one he was leaving, not even the doctors that he spoken with about me going onto chemo, had a clue.  The one thing he did do was order some ct scans before he left.  When I got home, I was so very upset, I called Northwestern....I now have my fourth oncologist in 2 years.  Things do get better though.  My transplant dr., had cleared me for chemo.  Unfortunately the nasal mass they have biopsied three times has begun to grow rather quickly, so though it is still knocking out my hearing in one ear every couple of months it is now completely in my mastoid as well and considered severe.  But large enough to where they can get a good biopsy.  Due to the mess left by the oncologist they hurried and got me in with the new one.  I actually liked him a lot, and he understood completely the need to take of one instead of the waiting for the cancer to get worse or the failing organ to get worse.  He is also concerened that the lymphoma I have has transitioned into a more aggressive kind due to the rapid growth.  So this upcoming friday, I will receive a head to toe pet scan, followed up with him the following Wednesday.  He also gave me a couple of treatent options based on the test results.  Who knows there may actually be a light at the end of the tunnel. Oh and the scans have already come back with corinary artery disease....nothing like having another brick thrown at you,  I really need to learn how to duck better.

Now that you have heard my woes on health lets move over to the technolgy end.  One day woke up and my computer refused to boot up due to something with windows...I did the repair it  as suggested (a few times) nothing....Used the laptop looking for answers, it said try safe mode, so I did....you know how in safe mode it lists all the all the window lines, well mine stops about half way through.  So I have to figure that it is something in windows that got messed up. The catch is that everything is on there.  from promo pics to family pics and I don't want to lose them.  There has to be a way to bypass windows and get to the hard drive so I can pull them off of it and then take it back to factory settings.  Well short of taking my computer apart and physically removing the hard drive which is an option that many reccomend but you all know what a clutz I am.  Now that the week of visiting doctors is over, I am contacting a family member and also a friend so that maybe with luck they can walk me through a way to to pull this stuff out.

Many of you know me well enough that when I am quietest I am dealing with things,   That is really where I have been....hiding from the world under a rock.  The Christmas spirit has missed me so far....but I did redo the the sim and the holiday workshop, ice skating, venue and amusement park are done and open.  You know me it is different each year, so I hope as you explore the sim you truly enjoy it.  The Shore

I have also taken the time to set up our annual holiday party, so save the date--December 20.  The line up is amazing and there will be diffent themes throughout the party to win the best dressed in that theme.  You know I don't know how to put together a small event.  The best thng is that I am finally feeling the Christmas spirit and started decorating in rl. 

You have my word that I am bouncing back and will be venue hopping before you know it.  there are a bunch of performer that are on my pc and I will also be posting them if I can get them.  You also have my word to those of you that im me and tell me that you weren't aware, I will keep you more updated and I appreciate all the love you send me.