An Update on the Lack of Updates ☺

Hi All!

Thank you for being so patient with me over the past few days.  I know there are many people reading along with this blog and eagerly awaiting posts, but it has been HARD to get on here to actually do it! Between the constant flow of, (very welcome), visitors in and out of my house and the lack of concentration to write coherent sentences, it definitely has made it hard to find the time to blog.  Further, it is frustrating because I really don’t have any updates to give since being sent home from the hospital, and I will not have official results of my lab tests until I go back to my follow-up appointment with my surgeon next Tuesday, December 21^st.  All we KNOW right now is again, that the on-staff pathologist present during my surgery felt that by looking at the tumor and cells removed from my brain, that some sort of abnormal cells still remain in my brain and couldn’t be removed at that time.  These abnormal cells couldn’t be removed then because they are located in an area of my brain that is tricky to reach with surgical tools, (from what I understand).  Whether these remaining cells are just abnormal cells with the potential to develop into something more serious OR… (dare I say it, cancerous) could not be determined at that time.  So that’s where we are currently – waiting to have a face-to-face meeting with the surgeon on the 21^st to get my “diagnosis”.  At that time I will be set up to work with a radiation oncologist who will develop a plan of treatment for my specific case.  I trust that my surgeon and his colleagues at St. Luke’s will be able to steer me in the direction I need to take to get the best treatment available.  That is not saying that in the meantime we are not actively looking into other facilities that have better equipment to treat me when it comes time for radiation.  But if the same equipment that’s going to help me is available in the Lehigh Valley that another facility across the country also has, it definitely makes more sense at this point to stay close to home where my support system is.  Am I getting too ahead of myself with this explanation yet?  I just want to do my best to clear up any confusion about this already very fuzzy situation… One day at a time, right??

Many people have been asking how I’m feeling physically since being home.  Overall, I’d say that I feel GREAT for having brain surgery a week ago today!  

*My main complaint is that I feel groggy and that it is hard for me to get my thoughts together sometimes.  For those of you who know me well, you know that I don’t like to do something until I am confident that I can do it well enough so that I don’t look like an idiot :).  Call it what you want- minor OCD or a constant pursuit of perfection that has always made me, ME!  I'll admit it, maybe that is another reason I haven’t posted on here since last week.  But alas, I need to let go of some of that pride and fear of failure and tell it like it is… That being said, YOU'RE WELCOME for my vulnerability! :)

*Short-term memory is out the window for me right now – if I don’t do something right away when I have a thought about it, it’s long-gone for another time.  I’d imagine I am acting a little scatter-brained because of this. 

*Up until this point I have experienced minimal pain at my incision site, (which is about 3 ½ inches, by the way).  It runs vertical from the top of my head down the left side until just above my left ear.  It’s rather clean and pretty from what I can see, but I will spare you an unwelcome visual aide at this time.

*I have headaches occasionally, which I am taking Tylenol for, but they haven’t been bad at all.

*I have some jaw pain resulting from a few pre-surgery factors combined with the perils of surgery:  Let’s just say pre-existing TMJ + my mouth being open for 4+ hours during surgery + surgeons stretching the jaw muscles located at surgery site = SORE.  This does not affect my eating, however.  Hallelujah!!

*Sleeping has been insanely better since leaving the hospital, that’s a given.  Since I am still on a heavy dose of steroids however,  (and steroids keep you awake), I do not really feel the need to sleep a lot during the day.  I have been waking up at 8am every morning, eating, showering and then awaiting my visitors J.  I take my medications for the last time at night at 10pm and then some time after that I make my way to bed by midnight.  I will sleep about 5 hours, wake up to take more meds, and then sleep off and on another 2-3 hours.  As time passes, the amount and types of medications I am taking will balance out and I will get back to a normal sleeping pattern…

Well, my brain is finally spinning in attempt to post a coherent entry for you guys!  haha!  I just wanted to take a final minute to again THANK everyone for their positive thoughts, prayers and advice that you’ve been sending my way by means of emails, cards, gifts and visits!  Bear with me while I sort through all of the above and thank you personally!  Honestly though, how will I ever re-pay you all?  

The past few days have definitely been a WHIRLWIND of different thoughts and emotions with a Twilight Zone-twist for me.  I could blame it on the meds, swelling of the brain or the adrenaline that is coursing through me, but really I have been making it through these days on pure and utter LOVE from ALL OF YOU!  So THANK YOU from the bottom of my heart!  Check back for further updates and I will see you all soon!

xoxo,

Casey