Sunday, February 24, 2013

The Family Portrait....sort of

This came home in Kinson's backpack this week.  And in case you are wondering the significance, we are a family of 4!  But to make sure what I thought in my head is the same as what Kinson drew, I asked him to tell me who is in the picture.  And I was correct--Mama, Kinson, and Papa.  He did acknowledge that he did not put Cohen in the picture but acted like it didn't matter.  I know at some point every kid thinks it would be better off being an only child and not having to share your parent's time and attention, but this really bothered me.  And I am sure this is just one of the many times we will go through the typical brother/sister relationship struggles. But I really hurt for Cohen.  Until recently, it has been hard for the 2 of them to have any relationship that had any communication involved other than Kinson telling Cohen what to do.  Well now that he understands her more, he doesn't always like what she has to say to him and that she stands up for herself!  And to him it seems like she gets to go to this extra special school (and is really is that special) and that it is so much more wonderful than where he goes because she is constantly bringing home projects and getting to dress up or bring stuff to go along with the theme for the week/month and she gets all this fun homework.  We had a long discussion about it that never really went as planned but he finally said he was mad at Cohen because she did not bring him Hershey Kisses for Valentine's (another school project that she made).  I know at that point he was just fishing for an excuse but we still talked about it.  We also talked about how his favorite 2 people in the whole world are his Uncle Robert and Uncle Bo, who just so happen to be his Mama's brothers.  He knows our relationship but I think still can't grasp that "big people" can be brothers and sisters.  But I explained to them how all through the years we have fought and played together but most importantly how much we loved and took care of each other, even as "big people."  Do I think I got anywhere we this crazy little boy?  I have no idea :)  but I am definitely making more of an effort to talk about family with him and the importance of it.

Monday, February 18, 2013

40 days...

I have given up many crazy things in the past years but this year was hard for us to think of things to "give up" this year for Lent.  We have always been pretty healthy but had a few areas that could be "tweaked."  But this year, we have made a big effort to overhaul the unhealthy and it took effect long before Lent and I sure want our new habits to stick with us long after Easter.  So I decided to look within myself.  
I think some things people say are out of habit as well as just conversation.  I also believe that you can can get "stuck" in a mind set that also drives these conversations.  With everything that has been going on, I have tried my best to have a positive attitude but I think all my energy and effort went there!  So now I have found myself being a big complainer.  I work in an atmosphere where majority of my patients complain about something--the nursing home life, food, the news, etc--, also Medicare has been constantly changing putting constraints on my profession that make it difficult at times to remember why I do what I do.  I was feeding off all this complaining. But That's just part of it.  I complain about the weather, food, politics, you name it and I feel like I couldn't say a nice thing about it!!  So I decided to just stop.  I am going to try my hardest to not complain for the next 40 days in hopes that this will give me a new outlook on things other than just my health.  Day 1 was a major challenge and I have had to catch myself ALOT :)  but I am sticking with it.  It has now been 5 days and I can tell a HUGE difference in just a few things I would normally repeatedly say throughout the day, "I'm so tired", "I hate the rain!" etc.  Even though it has been challenging, I can definitely say it has been refreshing!

****MD Anderson Update****
This has been my biggest challenge to stay positive about the last few days!  I heard from them Thursday as they tried to set up my appointment with the endocrinology team.  I kindly told them that I have no need for an endocrinology team, I have that here.  They said for "thyroid cancer."  I also reminded them that if it was indeed "thyroid cancer" than it was a lymphoma.  So I was then referred to the Lymphoma team.  They could not set up an appointment for me because I did not have a DEFINITE lymphoma diagnosis only a high probability.  I said yes we knew that and that is the whole reason for me coming to MD Anderson.  I have now had 4 biopsies that have each been read by 2 hospitals and the only ones that agree was that there was no lymphoma cells in my bone marrow.  The others all conflicted with each other.  It was referred to the medical director.  I then received a call from pathology and now they have decided to have my actual biopsy slides shipped to MD Anderson clinic and be read by their path team.  So now I am a patient of the "suspicion of cancer" clinic.  I am thankful for this mix up :) (give me some credit for trying!!)  I think this will save a us a few wasted appointments when we get to Houston. Hopefully, we will get an appointment for sometime in the next few weeks.  The were aiming for next week but we are hoping for early March.  Will keep y'all updated! 

Monday, February 4, 2013

The gray area.....

I am not sure about you, but I always thought that biopsies were pretty cut and dry.  You either have this or you have that, you have it or you don't.  And I like to think that after 9 years in the medical profession that I would have known otherwise.  I went to see my endo for my 3 month follow up and to check my levels.  I was also scheduled to see the oncologist that afternoon.  I knew there was a chance that the endo could have my results but I was unsure if I wanted to hear it from her because she really couldn't give me any options on how to proceed.  But things have a funny way of working out.  
One thing I LOVE about UMC--the interdisciplinary approach.  These doctors all talk and know each other.  So I shouldn't be surprised that during my endo visit my surgeon busts up in the room!  But it was very refreshing to have both in the same room and hear them talk it out.  He had my results and it was very frustrating to hear that the pathologist could not give a definite diagnosis.  He saw atyipical lymphoid cell hyperplasia that could be cancerous, could be precancerous, could be normal reactive nodes based on my autoimmune process, or just overgrowth of cells.  I think he covered everything it "could" be.  My doctors were so frustrated and even though we had not spoken with the endo team at UMC, it seems that the problem lied in the pathology department.  The decision was made that because of the rarity of whatever is going on, we needed to move to a bigger, more specialized facility-- MD Anderson.  The surgeon also agreed that taking out any more tissue/organs was not an option, because we would only get the same results.  
That afternoon, I met with the oncologist and she agreed to the no more surgery and also felt like it was very "gray."  Her plan is to rescan me in May and see if there has been any more progression and if not, than this would be the routine every 3-4 months indefinitely until something did progress.  She did request to send my biopsies to Mayo to get a second opinion but doubted it would show anything different.
I think I was content with this plan, especially since I knew we were still planning on going to MD Anderson.  However, be careful what you ask for.  I get a phone call Friday morning from the oncologist.  She was only going to call me if Mayo results were different.....and they were.  They actually gave me a diagnosis---Follicular Lymphoma In Situ.  If you go look it up BE SURE TO INCLUDE the "in situ" part.  It is very important.  The diagnosis is a fairly new diagnosis recognized by the medical world, like less than 15years.  UMC has only seen 3 patients with this.  EVER.  From my understanding, it is cancerous cells that are inactive.  Will they ever become active?  That is unknown.  Again, the "wait and see" with periodic scans method is what is recommended.  
Nothing has changed.  We are still planning on getting another opinion and if they agree, than maybe we could get a better picture of what to expect.  My next scan is also already scheduled-- May 6.  In the meantime, life goes on.  Soccer has started up, dance is in competition mode, and my baby boy turns 6 tomorrow.  3 months ago, I wasn't sure what treatments I would be taking that might interfere with these things.  I am so thankful that there hasn't had to be any yet.  That I get to be part of everything and that I feel a sense of normalcy returning.  
We should hear from MD Anderson this week and will be sure to update when I do!