Sunday, April 21, 2013

The fun stuff

I know we have a lot of things going on at our house right now--Don't we all!!-  but we do have a lot of fun times too! 
2 of my besties from way back getting ready for the Color Me Rad race.  It benefited Batson Children Hospital, which has been a vital part of Cohen's diagnosis and interventions, so we were glad to participate!!
Not to mention it was lots of fun to get all messy too :)

Hanging out with the best friend Carson at the bowling alley.  Note to self:  6 year olds can be very competitive!!

Easter morning before church.  Can't believe they actually touched each other!!

Cohen had had enough at this point!!  (Please diregard the dead plant on the porch!!  It has since been replaced :))

He will absolutely kill me one day for this picture!!  But this is my child's personality captured!!  He is so full of life and wants everyone around him to know exactly what he is feeling-- good or bad-- and just be part of it with him!  This is him singing some Luke Bryan before bedtime!!

Now she is Miss Prim and Proper when it comes to her dance style!!

Working out with me!  She is doing her reverse lunges and watching Shaun-T and his "clean belly" as she calls it!!

She requested her picture to be taken before school one morning.  She is getting to be such a ham when it comes to pictures.  She SCREAMS "Cheeeeeeeese!!" at the top of her lungs when she wants her picture taken :)

Thursday, April 18, 2013

Leaving on a jet plane....

headed back to Houston!!  This is a late update but have been crazy busy with baseball, soccer, work, etc.  But just days after I posted to please pray that we would hear from the Drs at MD Anderson---I DID!!  Dr Fayad himself called me Friday morning to let me know that he had already scheduled for me to come back April 24/25 for some more scans and a face to face visit the next day to discuss results and plan.  Believe me, I was prepared to fight if I wasn't going to get a face time follow up visit.  I have scheduled at PET scan Wednesday morning, a CT scan that afternoon, and follow up Thursday afternoon.  It is crazy that it is such a big facility and I have to have these tests done separately because UMC has a FABULOUS state of the art CT/PET scanner combo!!
So what do we know so far?  When he called, I was down the hall with a patient and lost all train of thought but I do know that MD Anderson was able to get my cervical lymphnode from Mayo clinic and biopsy it.  Good News/Bad News-- inconclusive!!  Well not really technically inconclusive but 2 different 24 letter words that are unable to be pronounced and one means malignant and the other unsure.  Yep, even they can't determine it.  However, it did state high probability of follicular mutations and needed close follow-up.  While there, I had over 50 labs done, thanks to my virtual chart I know this :)  Several of the labs were not in normal range and he explained that because of the labs and in combination with the pathology reports, that follicular lymphoma is likely.  So he would like to rescan me next week and compare with my previous 2 scans for any changes and schedule another biopsy in May.  This biopsy will be CT guided, not sure what exactly that entails but it is on my list to ask.
So again I ask for a few specific prayers-- safe travels, fast scans (because I can't eat before any of them and my last one is at 4:00), and clarity on the next step.  The next step, as in the biopsy, is very scary for me.  My surgeon here is very cautious and I appreciate that considering my limitations and I want to ensure that I relay these same concerns to Dr Fayad.  It means so much to me that there are so many people keeping us in their thoughts and prayers.  Never did I think, I would be in this position but it has been eased with all the support.  I know I will have lots of downtime in Houston so I will be sure to update after my appointments!

Monday, April 1, 2013

Patience is a virtue....

and I am not sure that I possess this characteristic :)  I wish I had a real update to give but all I have is a bunch of fancy labwork, written pathology reports, and MRI results.  I am not sure how I feel about this "virtual chart" world that I am experiencing right now.  I appreciate the availability of my results especially since I am followed by so many doctors and I can print them all and bring them with me to appointments.  However, I hope doctors aren't using this as an out to actually communicate a professional interpretation.  I have emailed and phoned nurses and doctors, as they freely gave out nice handouts with who to call and email with any concerns, over the last few weeks and I have heard back a few answers, "your results are available online," "did someone ever contact you regarding your last email," and " I will see the dr tomorrow and I will call you right back."  I was forewarned that my lymphoma tests might take up to 2 weeks to get back--well thank you virtual chart, I know they have been complete for 10 days now.  
I have forwarded many of my tests to the endocrinology team at UMC and they feel that the adrenal nodule is actually more fluid based since each scan show fluctuation in size with no actual mass shown.  This is a good thing.  It will continue to be monitored by ultrasounds at UMC.  The only other endocrinology lab that was really out of whack was my Thyroglobulin levels.  Normal lab value is less than 0.9 and mine was 55.  Don't go researching it or you will think we are back at square one with Thyroid Cancer.  Thankfully that is not my case.  Elevated thyroglobulin levels can also indicate uncontrolled Hashimoto's.  At the moment my TSH and other thyroid labs are still fluctuating as the remaining quarter of my thyroid tries to do triple time the work and eventually burn itself out.  Through this we are trying to get my meds straight.  This can be a tedious process and the side effects of dosage change aren't fun so it needs to be done in small increments.  So far, I have upped my dosage twice and have tolerated the side effects okay.
Why haven't I done this with my lymphoma labs and gotten the oncology department at UMC to interpret?  I went to MD Anderson with hopes of some clarity.  I want to hear their interpretation before I have UMC interpret.  I am not saying that I don't value UMC's opinion, I do!  I have complete faith in Dr Elkins and her team.  I would like to hear Dr Fayad's impression and plan and then bring it to my team hear and see what conclusion we can come to.  I say all this with hopes that I will hear from MD Anderson soon.  
Yesterday, we celebrated Easter and I can say how I have seen the last few weeks in a new light.  I attempted very hard to keep to my giving up of complaining and besides my medical issues, it hasn't been that bad to get into good habits.  I have began to appreciate small things.  There has been a few late nights of Mario memory, dancing to Luke Bryan CD's, and just plain on cuddling.  However, I did have a special prayer for clarity and patience.  God heard me.  He knew I was beginning to question and falter. Today at work my general physician called me because she had me on her mind!  Let me also tell you, she was not working.  She had her gallbladder removed Friday and was recovering but just wanted to check in with me. I haven't seen her since September and she has changed clinics since then.  I was unsure how to get all my new info to her without making an appointment.  Well thankfully, I haven't had to make an appointment but Bear has ad he gave her the cliff notes as to what has been going on.  She had requested my UMC records and had reviewed them and felt like I was receiving superb treatment and agreed with the "gray" area.  I was able to just talk to her and she explained that something was going on at the follicular state of cellular formation and all of my labs and biopsies that have all been abnormal can be indications of 1 of 2 things-- Autoimmune process and Lymphoma.  Even though she wasn't able to clarify my diagnosis, she clarified that it is hard to interpret and nothing has been left out.  I needed to hear that today.  We have done everything, now we just wait.