Our Visit to SCCA

It has taken me a while to write this post because of how confusing the day went Monday and because we just didn't have the complete information.   We have had several people watching and checking for a report, and we thank you for your love and concern.  Here is our report.

We went to SCCA to discuss a trial that they thought would be good for Terry.  We discussed it with three different people while we were there. One was a nurse we had seen a couple times during transplant - it was fun to see her.

The trial sounded like a great idea - it would include a drug that was designed to pull the bad cells out into the blood stream so that the chemo drugs would then be able to attack them. We kinda liked the sound of that.   If this worked then he would have a second transplant. 

One of the people we met with was a research doctor who didn't seem to know much about our case. She was the one that needed to sign papers with us.  We asked a few more questions and things got really confusing.  Among other issues, we found out that Terry might not even be eligible because of the MDS that he has. We're not sure why they didn't figure that out before we got there. 

Finally, after the research doctor left, the nurse was able to answer some of those questions we posed to the doctor (who didn't really seem to answer the questions, but just gave us the info she wanted to answer with).  We got a few things straightened out and there seemed to be only one way to do this, if it were even possible to do.  So we signed papers because we didn't want to go back just for that, but knew that we really might not do this trial, and came home waiting for an email from the nurse, which we received last night.

The problem was "due to the deletion 5q chromosome (MDS) [he] is not eligible for the protocol that we discussed on Monday".  We just don't understand why they didn't look at that before we got there.  Good thing we asked so many questions.

At one point Terry said something like "so you want to see the bear even though his tracks are there" when the research doctor said that she didn't know if he has the MDS for sure, she wanted a more recent bone marrow report, as if July 31st wasn't recent enough. Just because our records show that they see it doesn't apparently mean it's there????? We just don't get that one! That is one thing we will have from that strange day - a fun little saying to bring a smile (one of those questioning smiles) to our faces. We are making memories! :)

Hopefully this post makes sense to you, I am leaving out a lot of the confusing conversation we had with the doctor in hopes that it won't take me all day to write this, but it might be more confusing to you, so I apologize.

The email we received last night suggests that we now consider the Revlimid treatment that was discussed earlier - that is the daily pill for the rest of his life.  We aren't sure what we will really do.  We'll study up on that and pray and consider it, but don't feel very rushed to do so.  Really, we are still trying to get over the confusion of that visit Monday.  It was almost comical in the end, and we were trying to figure it out most of the way home. We are grateful for that nurse who seemed to have our best interest at heart and helped make things more clear and tried to make up for the confusion that the research doctor left in the room and in our minds. She seemed so flustered when she left - I think one of my questions really made her feel attacked ... I didn't mean to, but things changed drastically after I asked if this trial was going to be done for Terry's benefit or if they wanted to do it for the research.  I guess I didn't use the right words. That happens a lot for me.  Sorry!  I did apologize to her.

Now, if they would have just checked about the 5q chromosome before we got there this long confusing day could all have been avoided.  Did I already say that ?

So, you might really want to know - how is Terry doing?   I was thinking about this Sunday and the thought came to me - "you can't keep a good man down!" - you might be able to slow him down, but you cannot keep him down.  He is still willing and able to get up, get dressed, and get going (one of his sayings he repeats to the kids on occasion).
Really, over all, he is doing great.  He has been able to work all year with the farm work. He does get too tired on occasion and allows the boys to handle things when the need arises, but many times he just keeps on working.  He has a constant ache especially in his hips and legs (which at this point, on a scale of 1 to 10, he considers about a 3), but again, he doesn't let that stop him. 

Another thing I was thinking about Sunday, as I thought about his condition was this -
For about 8 years now I have driven most everywhere we go, and even taken him places he needed to go because it would wear him out to even drive.  He can drive himself most places now, though when we go together it is habit that puts me into the drivers seat.  I used to stay home from many things because he needed me and my help.  Now that need for me rarely occurs, and I kinda miss it.  I think I stay home because I need to be near him more than he needs to be near me.  I just can't be gone in case he might need me.  I suppose I've become more dependant on him than he has on me.  Oh Bother!  How do I overcome that one? 

I just really love him and I'm so grateful to have him.  I sometimes wish he was retired so I could see him more often, but that wouldn't be good for him - he is one of those good men that you can't keep down - it would be too hard on him if we tried.

So life ... here we come ... still!