Thursday, November 15, 2012

Sleepy Time

I'm not quite sure what the deal was with Steve today.  I woke up at 7 am and he was sleeping.  He slept HEAVY until 8 PM.  He woke up a few times when some doctors came in, but was even difficult to wake.  I am not sure if all the days/nights of limited sleep finally hit him?  If it is something related to whatever is going on?  Or what?  He even slept through all of his vital checks.  He fell asleep while taking a drink of water and spilled his water all over himself and the bed. It was a very odd day.

I left at 11:15 to make it to Sadie's school by 12:15 to have lunch with her. It was her Thanksgiving Feast (Well, we had the Jack in The Box Feast. We leave the Thanksgiving Feasst in my moms hands!!!)

Me and Sadie Rae <3
 Sadie wanting the pictures to be OVER!

On my way back to MD Anderson, I stopped at my baby brothers accident site.  For some reason this place means more than me than the cemetery.  I always feel his presence at the accident sire and I needed some comfort.  I cried, because I miss him so much, but yet had comfort in being there.  After poking around a little bit (45minutes), I fixed his road side cross because it was leaning a little and was coming out of the ground and then I got back on the road. It definitely did my head some good to visit.

 I couldn't get me and the entire cross in the picture.

When I got back, Steve was still sleeping.  He didn't wake when I came in, and was hard to wake when the infectious disease doctor came in.  He did wake for a few minutes so she could check him over.  As soon as she was leaving, dermatolgy was coming in.   They wanted to take some photos for student purposes, but Steve said maybe tomorrow.  After they were gone, I gave him the menu and said he needed to pick out some dinner.  He fell back to sleep with the menu in his hands. 

I'm baaaaack....

I was worried about a friend of mine that had a major surgery on Monday and was having an ultrasound today to check for blood clots due to swelling in her legs.  I messaged her mom on Facebook and her mom told me she was back in her room on this floor.  I darted out the door to go check on her.  She was in so much pain.  She was exhausted physically and mentally.  I wish I could take even half her pain away.  She needs a break!!

I also got to visit with another online friend.  I met Judy the day Steve was admitted.  Later I added her on Facebook.  She sent me a message and said "If you would have said you were 'Just a Bump in the Road Jennifer', I would have known who you were.  That was a nice feeling.  I just met someone who found and reads my blogs that is not my Facebook friend or a melanoma group friend!  While visiting Judy I found out she found my site from my MD Anderson blogs.  (Speaking of, I haven't done an MD Anderson blog lately.  I need to contact my communications contact and work on that!)  Judy is doing a very long and intense treatment, but is doing (and looking) GREAT!  I was so glad to meet her.

 Thanks for sending down the treats, Judy :)

There is an AIM walk this weekend in North Carolina.  I wish I could be there to meet even more of the awesome friends I have met through the melanoma groups.  My friend Tiffanie lives in South Carolina and will be walking in honor of Steve.  Also, my best friend that I have never met (I swear we would be though!) Chelsea, will have a "Steve on a stick" so Steve can be at the walk.  She will take pictures of Steve "doing" random activities at the walk.  Did I mention that Chelsea rocks?  (Read her awesome blog here)

So, now that I have made you all read my ramblings, I will get to the medical stuff.  It's what you're here for, right? lol  Well, I have no news.  Pretty much everything is the same as yesterday.  (Other than now Steve sleeps 24/7 - he is asleep again).  The few times Steve has woken up, he tells me that he feels very weird today.  The rounding melanoma doctor came in early this morning.  They were still waiting on lots of labs to come back and then were having a meeting a little later with all of the doctors involved to make sure everyone was on the same page.  The infectious disease doctor said they will need to repeat the spinal tap because they need more fluid.  She did say that the first  spinal tap showed some abnormal cells which could be sign of a viral infection.  They also want to go ahead and do the bone marrow biopsy after all.  The rheumatolgist came by and asked some questions, but his 14 vials of blood have not come back yet.  Hopefully those will start coming in by tomorrow.  Dr. Kim, Steve's actual melanoma doctor came in today.  Yay!!!  It's amazing how much better you feel just by laying eyes on YOUR doctor.  All of the other doctors are great.  Dr. Davies and his assistant, Jessie have been AWESOME.  But, there is still something quite indescribable about seeing your doctor come strolling in for the first time since Steve was admitted almost a week ago.  (His doctor has been out of town.)  Dr. Kim gave me a big hug and went over everything going on.  He has been kept in the loop even while he was out of town.  He agreed that once this is all cleared up, trying Zelboraf may not be the best idea since they can't guarantee that the Zelboraf didn't directly or indirectly cause whatever is going on.  He is going to double check their Anti-PD1 trial to see the qualifications.  I let him know that is the next treatment we are looking to do and/or surgery to remove the melanoma lymph node.  Obviously, we will have to revisit this after we get all this figured out. 

I got some good news for me today.  About 2 years ago (before Steve's diagnosis) I began having lots of unexplained issues.  The issues became so bad that I had to quit my job.  While the some of the symptoms have improved, others have not.  In reviewing my labs for the last 2 years, I found that my white blood cell count and platelet count have been low on EVERY test for the past 2 years (and I have had many).  Why did no one else catch this pattern?  When I mentioned it to the last endocrinologist, he said I need to see a hematologist.  I spoke to Steve's hematologist (who is FANTASTIC !!!) about this issue.  He is the "Professor and Chief of Benign Hematology".  He agreed to see me.  I called down to get myself registered as a patient, but have to bring my medical records to the office tomorrow.  I actually happen to have all of them with me because I was going to use this down time to get everything together to fax to Mayo Clinic in MN.  I wanted to go to Mayo because I need more than one type of doctor and they work as a "team", pretty much like the care Steve is getting now.  Once I see the hematologist, he will be able to refer me to endocrinology and rheumatolgy for the other issues that need addressed.  I am crossing my fingers that all of this works and I don't have to travel all the way to Minnesota after all.  This will work out much better for us for so many reasons. 

Thanks for reading a long rambling blog tonight.  I hope I have some real information to deliver tomorrow regarding Steve's issues.

P.S. While typing this, the nurse just came in and changed Steve's anti-viral medication from one to another.  Does this mean they found something?  I guess we will find out in the morning!


  1. Man what a day for you! Hope you get some answers! Hang in there lady!! Thinking of you guys!

    1. Thanks, Erin! Today should be a big day too. He has already been down for an MRI and a bone marrow biopsy, next up is a spinal tap.

      Thanks for thinking of us!

  2. Hi Jennifer, I am not sure how I found your blog, but I just wanted to tell you that I am praying for you guys. I do research at mda, in fact, have worked with Dr Davies. I have a PhD, but I don't know a lot about melanoma. My research was on breast cancer. I lost my mom to lung cancer almost 10 years ago. I hope they find out what is wrong with Steve and he is feeling better. I will be out of town next week, but if you all are still in town (hopefully not! ) the following week, or next time you are here, please let me know if you need anything.


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