One of the Top 3 Worse Days We Have Had

For regular readers, remember the days when my posts would be clever, whimsical and humorous to read?....well this won't be one of them unfortunately. Before today, in the last 2 1/2 years we have had 2 really bad days. Bad day #1: November 8, 2010 - The day that we found out Joe had pancreatic cancer. Bad day #2: February 22, 2011 - The day of his surgery when we found out they could not remove the tumor. Bad day #3 - Today, January 3, 2013 - The day our oncologist advised us that due to the continued growth of the tumor in Joe's pancreas as well as the growth of the lesions on his liver, he felt it was time that we discontinued any further chemotherapy. Stop trying to treat the cancer and start working on increasing Joe's quality of life. This was not an easy conversation for Dr. Zafar. He took longer than normal to come in the exam room, he came in quieter than usual. But in typical Yousuf Zafar manner, he told us the truth, his professional opinion, and our options, all with a half smile and a sense of true caring. I wish everyone could experience being around him (not necessarily in the Cancer Center surroundings - I don't want that for anyone), but could know him and know how much he cares about Joe and me. How well he has always treated us. How hard he has tried to give Joe the absolute best care possible. When they were passing out "bedside manner", he got a double dose. He is a wonderful doctor and person.

But what are our options: 1- Discontinue chemotherapy and start with a home health care nurse coming to our home once a week to check on Joe, obtain vitals, examination, answer questions and be a "go between" for us and Dr. Zafar. We will still see him as often as we want too. That schedule can be worked out however best works for us. We would concentrate on getting Joe feeling better. Trying to increase his appetite, monitor any pain and manage as necessary and help Joe continue to do the things he loves most: continue with the choir and playing the organ/piano at PGUMC, teach his private piano students and be able to get out and see friends. Basically, return Joe's life to the normalcy that he had before the last few months of intense chemotherapy. The side effects have taken a big toll on him. 2- Dr. Zafar can refer Joe to another facility for a 2nd opinion. He can refer locally to UNC or wherever we would like to go including Johns Hopkins and other well known facilities. We just need to name it. 3- Try a different combination of some of the 6 different chemotherapies that Joe has already undergone.

We have an appointment with Dr. Zafar (he wants me to call him by his first name...but I find it really hard to do. After all, he's Dr. Zafar! ) next Thursday morning where we will have to give him our decision.

It's been a very emotional day for both of us. I cried at the appointment, Joe cried at the appointment. I cried at home, Joe cried at home. I cried at work, Joe didn't go to work so no crying there. This evening I have had conversations with my family and Joe's family. We wanted to talk to them before we published anything. We have gotten lots of texts, emails and phone calls. I have gone through the story today with 6 different people. I can't do it anymore. Besides starting to loose my voice, I am tired of telling it. It exhausts me. Joe is having some voice issues of his own. It sounds like he is getting laryngitis, but has no other symptoms of an oncoming cold. Therefore, he just isn't talking if he can help it.

To everyone who has called, texted or emailed, I apologize for not answering. It was very important to us that our family know about today before anyone else. This isn't something I can put in a text. Thank you for the love and prayers. Matt, Jeannette, Izzie & Jake: Thank you for the flowers to brighten our day. They could not have come at a better time.

Please say an extra little prayer for Joe the next time you talk with God. Say one for me too. I need the extra help to be stronger right now.

Good News, Bad News

Or not so great news, but not terrible news.  Trying to put a positive spin on today's doctors appointment at the Duke Cancer Center to get the CT scan results from Sunday.  The not so great news, at least a couple of the lesions on Joe's liver have increased in size.  The better news is that the tumor in the pancreas seems to have shrunk just a bit.  The growths in the liver are not large, but growth none the less.  Dr. Zafar and Leigh Howard were hopefull that the new 3 chemo infusion regimen would show better results and therefore he is switching Joe to another regimen.  Another reason for the change, all the fevers that Joe has been having.  Although they can't difinitively point to the chemo, they can't rule it out as a side effect.  Therefore it's on to a new treatment. 

Initially this one will be every Monday, about 2 hours of infusion time.  If Joe tolerates that well, then it can be administered once every three weeks as one 6 hour infusion.   So we will start with the weekly and possibly move up to the longer treatment.  Needless to say, once every 3 weeks would work better scheduling wise, but if he doesn't have a positive reaction with regard to side effects, then a massive 6 hour dose might not be a good alternative.  Only time will tell. 

Of course we are somewhat bummed.  But since it wasn't all bad news, we will just forge forward.  Joe seems to have taken it in stride (he usually does better than me).  One other positive aspect, no more home infusions.  So I won't have to go off and have a hissy fit when the home infusion nurse comes in the room Monday...because she won't have any need to!  I can't speak for Joe but I think he is just really tired.  Tired of bad news.  Tired of not feeling well.  I know that I am tired.  Tired of many things!

Many, many thanks for the well wishes and words of concern.  Your prayers and words of encouragement are truly helping both of us.