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PostPosted: Thu May 27, 2010 4:15 pm 
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Hi Krista,

There is never a good time to have a seizure, but so close to driving and going back to work - its a real shame. I went through a stage of feeling whenever I took two steps forward, I'd end up taking one, two or three back.

Like always try to focus on the positives. The trial is going well and his cancer appears stable. Try to take some time out yourself occasionally. Have someone who you can confide in, especially about your fears.

You have both come so far. As far as I can tell this is a speed bump. Cancer is a real test of character. I know you both will come out of this stronger!


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PostPosted: Fri May 28, 2010 12:02 am 
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Thanks Ken,

I am feeling better this morning. You always know the right words to say :)
Krista


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 Post subject: Mark is gone
PostPosted: Wed Jan 12, 2011 7:29 pm 
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My husband Mark is gone. He passed away on December 28 at 6 am. Not from his original grade 3 oligo, but from a new tumor that sprouted up after being off treatment for a few months. This tumor was inoperable. We had an MRI on August 5th. They only offered him Avastin. I asked for him to start temodar, but Dana Farber said they weren't worried about this new spot.
His next MRI showed extreme growth...still only Avastin. Went to MGH for rads. Tumor seemed to be a lot smaller, but Mark had symptoms....this tumor was in the center of the brain, and had grown into his brain stem.....after thanksgiving, he could no longer walk, had trouble swallowing etc. I contacted Duke, but we never made it there.

The last two years were the worst of my life. I lost my husband the day of his diagnosis. He turned into someone I didn't know, but loved with all my heart, he made selfish choices, kicked me out of our home twice, let his drug using best friend move in with us despite me being against it...and yet I was still supposed to just LIVE with it since he had cancer....I moved out after living with the drug using best friend for a few months, having to clean up after BOTH of them,the last straw was when my own husband told me I had to pay half of his car payment and insurance if I wanted to drive HIS car, after all we had endured together, he only cared about money....I left for a few months,but we were still talking. I found out he had a girlfriend when I met him at the hospital, they had been dating for two months, and this girlfriend had been there for him through thick and thin so he said, and I hadn't......yes, two months trumps five years together and two years of hundreds of dr appts, hours of driving, buckets of tears, nights of worry, days of complete mental break downs,food being thrown in my face, being treated as a doormat by not only him but his family as well, so I had to let this girlfriend into the home I had with my husband,since the awful roommate was there still, she took tons of Marks clothes, his pillow, music, movies, anything she could, she was totally shameless and I still can't believe Mark allowed her into his life.....and yet I still LOVE HIM....I told him I would do the last five years over, and he said he would too. He told me he loved me, I know he did in his own Mark way. I made sure he knew I would love him till the day we meet again in Heaven. I love and miss him so much I can barely breathe. I would give anything to see him again, even if it was one more crazy outburst on both our parts.


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PostPosted: Thu Jan 13, 2011 11:03 am 
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So sorry Mark has left us. Judging by his condition and his girlfriend things would have only continued to decline. At least now you can remember the man you loved rather than the shell he became.

Not a great start to the year. I remember that for all the changes that I have made there are no guarantees for this disease. It is my fervent hope that I will not underdo such a personality change, even if its the disease taking over.

It is my sincere hope that we treat the real causes of this disease, rather than searching for a magical cure. We are all victims of this mentality, which could have dire consequences for the human race.

I appreciate you letting us know. Many of us were following his story and while it isn't the result we wanted it gives a chance to know. I hope that you stay in touch.


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