WELCOME TO MY WORLD...
Where to start? I had my first appointment at Moffitt Cancer Center with Dr. Raj. I stayed up the night before my appointment to put together as much of my records as I could copy from my online portal at MD Anderson Cancer Center to satisfy the powers that be. After I had finished at 4 AM I looked on the Moffitt patient website to check my appointment and get directions. I noticed it asked me to fill out a questionnaire before arrival. I figured no big deal until I open the page and it was VERY extensive. It took me almost an hour to complete and by now it was 5 AM and I had to get to bed.
Always entering a new hospital facility can be a daunting experience, but this was a rather pleasant one. When you sign in I was amazed by a really cool device I had never seen before that allows the cancer center to track you anywhere in the building. I call it Lojack for patients. It's no bigger than a wristwatch that attaches to your wrist. It's a WiFi location tracking system made by Ekahau. The best part...You don't have to sign in at every station for each appointment. You only sign in upon arrival and then head to the lobby of you next appointment and sit down and wait to be called. I wish all cancer centers utilized this little device. SO COOL...SO CONVENIENT! I'd love to see the tracking system monitors, how it works up close and also wonder how many people it can track and how far. In fact if I had children I'd find a way to connect this to their cell phones for their own safety. I'm sure that's already been thought of.
|Ekahau's Location Tracking System|
FIGURING OUT WHAT'S WRONG WITH MY CHEEK
Dr Raj is a very kind doctor who listens to her patients. I was very impressed with her. She went over my history and was rather concerned about a few things that as she went on talking about, made me a little nervous. As she explained I grew ever more silent and all I kept hearing in my brain was, "Oh crap! Oh crap! Oh crap!" That's the PG version for those of you who really know me!
My face has been reconstructed and cut up and things added and taken away. I'm like a patch quilt when it comes to my face. I have issues with scarring and this has apparently led to some pressure on the structure of my face, the bones. I was warned from the very beginning that due to the radiation it would be very dangerous to have any kind for dental work or extractions done without the possibility of repercussions in the future. My jaw could actually shatter if someone unfamiliar with the affects of a radiated jaw bone worked on me. This got me thinking I should probably avoid barroom brawls too! I suspected this because my upper teeth are no longer aligned with my lower teeth, yet the bite of my jaw seems normal. I guess I never realized as the skin healed and began to scar and tighten my face that this could also become a problem. As a cancer patient potentially facing death you don't often look too far into the future...you only hope there is a tomorrow.
This problem could also be a product of how I have learned to chew my food again. After I began eating real food after being on a feeding tube 2 1/2 years I had to learn some new tricks if I wanted to eat some of my favorite foods again. This involved puffing my cheeks up with air to move food around or drinking fluids and using them to swish the food around in my mouth. I don't have a very mobile new forward tongue so this can make it harder to get food where it needs to be just to chew. There are times I still have aspiration problems, but not often, so I have to be very cautious to "think" while I chew which is something that most people don't have to do because it is an innate ability like breathing.
For years all food had to be cut into VERY small pieces and placed by fork to the molar area to chew. Any type of food like a sandwich that you would normally just pick up and shove up to your lips had to be eaten this way. Only recently have I mastered sandwich eating the traditional way with great practice and even then my bites are so small it takes me twice as long to finish.
ANYWAY...after Dr. Raj looked everything over including photos I had taken of the face issue the day it happened she concluded that a facial PET Scan and MRI should be ordered to eliminate the possibility of cancer and something new she brought up based on my facial structure and the scaring.
Ever since surgery in 2007 I have had all kinds of skin issues, sinus trouble, problems with my sight, and even some hearing problems. Some might be age and some repercussions of surgery and radiation. Because this anomaly on my cheek might not be cancer, but something as menacing she brought up something I had never heard of before, CSF - Spinal Cerebrospinal Fluid. Basically a brain fluid leak! GREAT now I'm going to lose with smarts I have left and they are all going to drip out of my nose!
Now here's an opportunity to raise some money on EBay. Let's market this a "Brain Drops" my loss is your gain. With just a few drop you too can become smarter than a 5th grader! What? It would help offset all these medical bills!!!
For the last year my nose tends to run even if I attempt minor household takes and even tends to run when I eat...very inconvenient. I had assumed it was just allergies which I've never had a problem with but if I take Claritin for allergies it seems to help. I NEVER would have suspected CSF! Bit by bit cancer steals everything from a person not matter how strong. Though Dr. Raj prefaced this as "the worse case scenario" I was concerned because I had all the related symptoms. So, she scheduled the scans and an appointment with Dr. Otto an Ear/Nose/Throat doctor after the results are in.
LET THE SCANS BEGIN!
I returned a week later to have my scans. I'm always amazed by the equipment and have enough experience enough now to compare them. My PET CT scans went very well but the MRI is always the worst and it was next on my schedule. It honestly wasn't too bad but I still want to know WHY they all don't let you listen to music during these things. My very first MRI gave me head phones...it was downhill after that and I was already spoiled. Nothing has compared since. The day went like clockwork, not one hiccup...no complaints.
|YES, that is my alien head on the computer screen! lol|
After a few weeks of wondering how many brain cells I had lost to this potential CSF I met with Dr Raj again to review my scans. Straight to the good news...NO CANCER...Better...NO CSF...HOWEVER...what is the problem with my face????? Only answer so far is a maxillofacial sinus problem. As she explained the small nipple like protrusion could actually be a sinus bone. I don't think so because it's seems like soft tissue unless this bone in similar to the cartilage like we have in out nose.
I asked for copies of the scans so I could post them and even had to fill out paperwork for their release, but so far, weeks later, I have received nothing. SO...now we wait for the ENT to determine what the hell is wrong with my face. Still tired...still in pain...AND STILL BITCHY!
WELCOME TO MY WORLD...