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.