Go to Queen's for my appointment with the radiology group. I have no idea where to go so I ask the volunteer directions and as I approach the wing, I see the sign that says Queens Cancer Center and immediately am taken over by a whole new host of emotions that I'm in a whole different league. Remember, or maybe I never mentioned-I hate doctors, doctors offices and certainly Hospitals and visit as rarely as possible. I have spent more time here in the last week (god it's only been a week) than I have in the last 5+ years combined at that is obviously going to get worse.
Anyway, I find my room, nicely appointed I'll admit I check in and am given the usual clipboard and paperwork to describe your life down to the color of your last pee-(aren't we computerized and as all this at Queens, you'd think they have a master database??? Apparently not) take a seat in front of the nice plasma TV showing the Diners Dives and Drive-In dude and start to fill out the forms. They bring me a glass of ice water with lemon-introduce me to the the other two people in the TV section wearing robes and discussing their own treatments-everyone quite friendly and seems to know one another. The nurse comes by and gets my paperwork-asks a few more questions and then oddly enough-brings me an Ensure and asks me to try it and see if I like it-ODD. She then tells me to go ahead and forget any diets or healthy eating practices for now and just grind! You'll want to keep your wight on as long as possible......
Now the truth coes out as all this is a facade! I am taken behind the swinging doors for the meeting with the Doctor. He comes in, looks at the charts does his own little physical and visual and then sits down to explain what is going to happen. They are moving so damn fast.
"First off, we need to make a mask"
A mask? Excuse me I'm completely unfamiliar with anything here can we get some detail. He apologizes and pulls out a book showing how they make an individually fitted mask for each person that resembles something out of Steven King. Purpose is so he can draw on it to better direct the treatments.....
Treatments-there's an idea and a good starting place, can you explain what you envision that to be in my case? Nope we'll get to that-back to the mask as we're on a schedul and need to make it NOW so we can see about possibly getting me down later in the afternoon for my PEG tube insertion......
WAIT A MINUTE......... MY WHAT INSERTION!
Please slow down as I have no idea on the over all plan of the "Team." fro me and am hear to learn of your portion and certainly have no idea what these items are your talking about-Apparently that Type A personality of mine (please) is causing problems again and he excuses himself to go off to make a phone call. He comes back apologizes and says he understood that Dr Adachi had done this already so we'll have to reschedule a time for the mask and the PEG tube insertion and just not start treatment until next week. I'm am freaking out as to how fast and with no communication they are willing to do things of such consequence and really I am not comfortable.
My comfort continues to deteriorate as we now get into what this treatment will truly entail. Bottom line is he has designed a program that will entail 5 daily sessions of approximately 10 minutes for a 6-8 week period. What this does I now understand will specifically radiate the neck area and attack the tonsil problem as well as the left lymph. STOP AGAIN. What left lymph. This one-and he shows me the scan Dr. Adachi did not have yesterday that shows an inflamed lymph node--not necessarily malignant, but not normal so he wants to attack the entire area to prevent spreading.
I am stunned and disappointed to hear the that I now have a lymph effected but I understand and he reminds me that a tonsil is essentially a lymph node anyway, but now of bi lateral concern. What I do not understand and question is the need to blast my entire neck and jaw-I understand technology in this field is such that you have the ability to radiate each individual node as needed and still be successful-why take them all on? He simply replies that is the best way he knows to get anything we don't see. Too much of a shotgun approach and its my neck so he does indicate this could change once they know what that shadow in the lung is about as the could be "bad" so for now he is ignoring it altogether and when I talk to the oncologist tomorrow he'll explain how it might alter the treatment. Again, not really comfortable with any of this at this point
Moving on, he then goes on to the side effects of his treatments and says I can expect minimal or no side effects for the first week or so. From there, patients begin to experience an extreme sore throat and possible blistering of the mouth-hence the Ensure tasting and the suggestion of the PEG tube as some people literally are not able to eat and drink. He further explains the strong possibility of the "complete and total destruction" of salivary glands and taste buds-causing extreme dry mouth and further effecting the ability to eat. In most cases, your taste buds will return over time post treatment, however, the same can not be said for your salivary glands -FOR LIFE!
At this point I am trying to take this in and I sure as hell don't understand how this treatment can be construed as "with great success and easily treatable."
This leads us to a conversation of any history of dental problems and my last check up. Oops-Ive been really bad on that and when I tell him probably 10 years (more like 15 if I think about it) he orders a complete dental work up and cleaning before he can do anything further.
Hey-I'm due and it gives me some time to digest this little shop of horrors and the nurse gets me set up for with the Dental department on Monday.