Wednesday, July 17, 2013

Rollercoaster Ride

The last week has seemed like the longest week ever.  When you have scheduled scans impending it pretty much makes you feel like you can't breathe.  A nervous wreck is an understatement.  You cannot focus on anything except what your life will be like after the appointments.  You literally never know what the Dr.'s will say or do.  So many times we have gone to MD Anderson expecting one thing, and then we get the complete opposite.  This time was no different.  We went into these scans thinking the worst, and hoping and praying for the best.  Bennie has been having hip pain, and a few headaches which had us on edge.  About 70 percent of people with metastatic melanoma eventually end up getting brain mets.  We thought for sure this was the case.  One of the hardest parts of dealing with this disease is the fact that you can't plan.  In a sense you can plan, but in your mind you are thinking that you really only have the time between now and next scans.  We are thinking in our minds will we be able to go to the circus this weekend? Should we pack bags for the kids in case something is found on the scans and he has to go into the hospital again?  You just never know what to expect.  It is so frightening when worrying about everything that could happen, and its hard to keep the positive thoughts alive and well.  Monday night after all of the scans was very hard.  The MRI tech said to Bennie after he was done... "Well Good Luck".   Those three words scared us so much.  Why did he say that?  Does he know something we don't?  Why couldn't he have just said "Have a nice day"?   Tuesday finally rolled around.... results day!!! We knew whatever news we got would be alright.  We have so many people supporting us and praying for us each day that we could take anything thrown at us.  But we weren't ready.  We are still enjoying this medicine that he can take from home, he can go to work, he can come home to Emmi and Colby at night and play with them.... we were not ready to give that up!!!   The nurse called us back to a room, and we sat there for an entire hour.  Every single footstep going down the hall would have us on edge.  The torture of footsteps coming towards your room is unbelievable!!!  Finally the nurse practitioner came in and delivered the most wonderful news we were not expecting..... EVERYTHING LOOKS GREAT!!!  We were so elated and shocked!!!! She said the scans looked even better than last time!!! So the plan is to keep on the Zelboraf, and hopefully ride this drug out for a very long time.  He is down at a half dose of this medicine, because the full dose is too toxic.  His kidneys are having some issues possibly from dehydration or toxicity of this medicine.  We are still trying to figure that out.  We are thrilled this is working, and are praying so hard for this to continue working at a half dose for a lot longer than 6-8 months.  It has been 4 months since he started this drug, and we are so happy for the time that we have on it that it works.   Thank you so much for all of your prayers!!! They are working.... even the Dr.'s are completely impressed at how fast and how great it is working on him.   We can breathe again!

1 comment:

  1. To the blog author,
    I am sorry for the ride you have been forced to take. With all that you are going through...I hate to use your blog in this way...but thought you would rather know. "Jenny" has been hijacking any blog/post she can find with a reference to cancer in the title (including mine) to push Branyon and her Center. Turns out, Branyon is NOT a doctor but a CRIMINAL! Fredda Branyon of Scottsdale, Arizona,has made thousands off sick and desperate individuals. Ms. Branyon started buying umbilical cords and cord blood tissue from a Del Rio birthing center in 2009. Then, with no training regarding stem cell development or the legal ability to do so, she manufactured hundreds of vials of "stem cells". She sold 183 vials of "stem cells" for more than $300,000, to Francisco Morales, who worked with the lab she owned, Global Laboratories. Morales, in turn, led his patients to believe he was a doctor (he isn't) and was arrested in Texas for treating people with cancer and multiple sclerosis in "treatments" not approved by the FDA. Branyon pleaded guilty during an investigation by the FDA and FBI in 2011. She was facing 3 years in jail and a $10,000 fine. I hope she is cooling her heels in prison as I write.
    Sad but true. Thought you'd rather know. Good luck on Zel. Many folks have been able to find success on it for lengthy periods. Best.

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