Wednesday, March 13, 2013

The Waiting game

And now we wait!  I did have my MRI Friday and it was painless but different.  I always go into these tests thinking that I know what to expect but it never works out that way.  An abdominal MRI is not like regular one.  Because you are always breathing, therefore muscles are moving, the pictures can not turn out so they put a monitor on you that detects your breathing pattern and only takes pictures as you exhale.  And at times they need to take a longer segment of pictures and a recording will come on that gives you instructions on breathing and holding your breath at times.  It was a little more stressful but it passed the time quickly.  And there are times that I enjoy these tests.  Why?  Because this particular time was the first time I had been alone in a few days considering we were traveling.  I was also very anxious about the results of this test just because it was something I was not prepared for.  Lots of praying went on in the little tube :)
Hopefully I should hear the results by the end of this week by email or phone call from both the MRI and bloodwork for my adrenal gland.  I tried to follow up with my endo here but she is out of the office until next week.  Again, I shall wait! 
I was impressed with the time the drs gave me there and just the vast size of the facility amazed me.  They printed me out a crazy schedule that everything that I could imagine needing, including instructions for eat/not eating, medicines, etc.,  ready to go as soon as I got there.  Even though we threw the schedule away after the first appointment because everything changed, it was still pretty organized for as many people as they see each day. 

What else did we do in Houston?  We brought Kinson along with us to sight see with Aunt Deborah while Cohen hung out in Mississippi with the grandparents.  I am still not sure which kid got the better end of the deal--- they were both spoiled rotten!!  Here are a few pictures from my phone:

This one isn't from our trip but from Kinson's first field trip in Kindergarten.  We went to see a play that was Little Red Riding Hood and transitioned into the Three Little Pigs.  It was cute and very funny, the kids loved it.  I enjoyed getting to spend sometime with him and meeting his new friends. 

Thursday, March 7, 2013

A little less gray

I apologize for not updating when we finalized plans but literally we had 4 days to get work, kids, and travel arranged.  But everything fell into place.  So here goes:
Today was the day we had been waiting on, our appointment with the doctors at MD Anderson.  Over the last few weeks, we have been back and forth with deciding the appropriate department to be seen in.  Last week after receiving my slides and reading them it was determined that I needed to be seen in the endocrinology department.  We flew to Houston last night and had scheduled 2 full days of appointments setup.  After registering for our appointment we took our seat and waited and waited and waited.  Finally when I asked, we somehow never got checked in!  So while they did that they sent me to the lab where they drew 10 vials of blood.  Then back to the endo department where we were immediately put in a room.  The fellow dr came in and let us know that there wasn't any reason that we should be in the endo department. WHAT!?!  But they would be willing to do a workup on the 4mm nodule that I have on my adrenal gland.  WHAT nodule!?!  Apparently on one of my previous scans it was noted that I had a small nodule on my adrenal gland which she would like to check in to but really wants my other issues worked out so she called Lymphoma department and pulled a few strings to get me in.  Today!.  
So down a few floors we went and got to meet Dr Fayad.  He was very nice.  The mix up came because MD Anderson was not able to get my slides of my lymphnode biopsy because it was still at Mayo Clinic.  So therefore they only saw my thyroid biopsy that has no cancer in it.  However, he does agree with the diagnosis that we received from Mayo Clinic.  He explained that Follicular Lymphomas can be hard to diagnose and even harder when at the "in situ" state.  But what he wanted us to understand is the just because it is "in situ" in one area does not mean that it is not active somewhere else.  The only way to determine that is another biopsy.  We all know the problem with this-- my lymphnodes are not accessible.  He does not feel like risking infections or my health is worth a diagnosis at this point.  He also felt that if we did another scan right now that enough time has not passed since my last one and he is afraid we might overlook small changes whereas if we wait a few months a more significant change might be seen (of course it can still remain status quo).  He ordered some blood work to check for mutations to my BCL2 proteins in my blood that could also give us a better idea if it is active or might become active.  He also reassured us by telling us that if we decided to do treatment at this point, the side effects are worse than the actual cancer right now since it has been proven to be slow growing/low grade.  This made me feel much better about the waiting game.  So the plan is to return in May (when my next scan is scheduled) and do it here in Houston and if needed attempt a CT guided biopsy.  Also, I am scheduled to have an MRI of my abdomen tomorrow morning to check out this nodule that I have.  The follow up regarding that will be by phone and my bloodwork will be followed up by emails with Dr Fayad.  
The day started out rough and my not complaining was tested to the maximum limit but so far we have felt like they have been as thorough as they could with the information they have been given.  
But there is so much more to this trip than dr appointments that I can't wait to post about but it will have to wait as I am EXHAUSTED and have to leave at 6:30 to be at my MRI.  Thank you for all the prayers as we have felt them all and I know that even though we have not gotten statements saying "You have _____ and you will do _______ to treat it."  I still feel like we are getting closer and that the explanations we have gotten has allowed me some reassurance with the plan.