So Kim tells me there are those who are reading the blog that are very frustrated with me. Apparently, I am not writing fast enough and have been dwelling to much time to past events. They would like me get "caught up" so that I write about the day to day stuff.
Kids, I realize the desire to know what's going on with me. However, I feel the previous information is critical to understanding our situations and our frustrations. The day to day stuff is not that exciting once we get there, and we will get there soon. I just think you needed a little history lesson. Without history , how can one define a base to start? Without a reference point, how can one choose which path is the better way to go? Without knowledge, how can one form poignant and critical answers or celebrate the small victories in this struggle? Please be patient. By this posting's finish, we will be caught up to the week to week stuff and will get into the nitty gritty cancer treatment stuff.
July 4th. We land and wonder down to baggage claim. As we get to our carousel, we are greeted by "Bob" holding a little sign with our names on it. Bob's got that great Chicago accent made famous by the SNL greatest football fans and their line "Da Bears" and "Mr Mike Ditka". Bob tells us he's our driver and will be taking us to our hotel and proceeds to grab out bags and scuttles us off to a big stretch limo. Inside, there are a few more couples and singles all heading off to the hotel. I thought the town the clinic was in was cose to Chicago. Finds out, Zion, Il, is the last town on the northeast coast of Illinois. 1.5 miles farther north, and your in Wisconsin. Ok, so much for a little site seeing on Michigan Ave. Matter of fact, little Zion, Il is an armpit of a town. It was dry up to 4 years ago, there are very few restaurants (Applebees is the High End cousine) and no bars to be found. Guess its a good place to build a clinic, being the big fish in a small town gives you a lot of clout!
July 5th. First appointment of the day is registration. At 7:45am, it's already 90º outside on it's way to record heat of 104º. Maybe being inside in the air conditioning will be a good thing.
Registration is a fiasco. It's probably the one place at CTCA that need a complete overhaul on how to handle patients. I get a hospital wrist band with bar codes for accounting, we each get a name badge which translates into free food in the commissary, and I get a leather business travelling attache for all the paperwork and business cards I am about to receive. We get hooked up with our "tour guide" or as CTCA call's them, the Care Team Consultant. He drags us off to our next appoint. with my nurse navigator. This person then describes the process, in medical terms, of what the next few days will entail. She is a nurse and knows her shit. She then passes us off at our next stop, meeting first doctor of the day. This gentleman oversees the testing period and records management to make sure all the pertinent information is available system wide for anyone to pull up. We hand him the wad of testing info we have had completed in the past 3 weeks. Big smile come to his face and claims we just lopped off 3 days of visit because we had all this info. He then gives me a lame once over with the stethoscope
and infos us we can head off to our next appointment. It's 10am, next appointment, 2pm. We are sad.
So we go for a walk in the 100º temps, not very long mind you. But it did kill 45 minutes. We then head down to lunch room. Very nice salad buffet filled with goodies that are all organically grown. Hot foods and a grill, drinks and deserts. I get a salad, you half to weigh it to pay for it, and the cashier looks at me as says "Ok, thanks" No one told us how the food thing works so I stand there looking like an idiot and this little lady behind me says in the sweetest little voice "move it asshole, your done, it's paid for by the hospital, get out of the way!" Thanks Grandma, I hope you choke on the tapioka!
And this is how the next 2 days goes. It's a giant meet and greet; 2pm Meet your Radiologist, 3pm Meet your Homeopath Care Giver, 4pm Meet the Dietition. End of day. Next day, same thing. 9am
meet the Hemotologist, meet the G.I. guy, meet the cardiologist, lunch. Then back with Nurse Navigation and then we're to meet with a Chaplin and a Life Quality person. I'm all meet & greated out. next meeting is actually medical finally. Monday morning meet with radiologist again for an exam and figure out direction for treatment. What? Treatment? They said the magic word. TREATMENT.
OMG, Kim and I are estatic. July 9th and we're talking treatments. If I'd have stayed at home at Wake Forest, we'd still be in the discovery period. Here at CTCA, boom, lets move on - treatment is needed fast!
WE like this place.
So Monday Morning we go in to see Dr Chang, my Radiologist. He again does the obligatory stethoscope exterior listen. He then asked if I had ever had a Endoscopy? My wife giggled in the corner. I said I had. But Dr Chang says there were no information in charts, we do one now. Yippie.
Out comes the Cadalac of Endoscopy Sex Toys. Dr Changs toy also has a HD Camera so while he inserts the thing down through my nose and into my throat, I'm getting to see it on a big flat screen monitor hanging behind Dr Chang in full 1080P Digital quality. Technology, ya got to love it. And because my throat is on the big screen, I loose all track of time how long Dr Chang was rooting away. He was also giving the tour of Jay's Throat a narrative, explaining what and where things were, all the while he's looking for that primary tumor. It was like being on the Discovery Channel!
Finally he gets excited, or as excited as a little Korean guy can get while having a large black plastic tube shoved down my throat. He say "look, here Tumor, on your tonsil". All looks like redish pinkish goop to me but I go along with him, he does have the Sex toy rammed down my nose. Now see starts taking pictures like a Japanese tourist at Disneyland. Frontals, Sides, even tried to get one from the back (that didn't go very well with the gag reflex). Finally, he backs the Sex Toy out and says that this was good, I see him tomorrow. And with that he leaves. Odd little man.
Besides, now I am late for my Hemo-Oncologist appointment. I hate that. Drives me nuts to be late, especially for a Specialist appointment.
So off to Dr Levin's office on the 3rd floor (Dr Chang is on the Ground floor.) To say that Dr Chang is an odd little man is a very unkind statement. Compared to Levin, Chang is a nice quite guy. Levin is one of those really smart people in the world that walk the line between insanity on one side and brilliance on the other. He is truly the definition of Odd Little Man. However, he is now in charge of my case. Apparently, the Hemo guy is the overseer in Head and Neck Cancers at this clinic. So I have to deal with this very bright guy and his quirky mental flow pattern. It's tough, he has a nurse that actually fills in the blanks while he is talking. Nurse Pam is a Saint. Anyway, Levin finds out Chang's taken pictures and has made a decision on his radiation approach and Levin is a little tweaked he wasn't in on discovery. He comes up with a Chemo treatment plan and radiology will just have to follow suit.
It's like watching 2 little boys in a sandbox each with there own toy. What ever, we got a plan and we are starting when? Levin says Chemo's to start next week Tuesday (the 17th), lab draws on Mondays. Chang needs a week of computer simulation for the Tomo Radiation Treatments to begin on the 23rd of July. Cool, dates and everything, a plan. I am very happy, anxious and nervous, but happy.
Kids, I realize the desire to know what's going on with me. However, I feel the previous information is critical to understanding our situations and our frustrations. The day to day stuff is not that exciting once we get there, and we will get there soon. I just think you needed a little history lesson. Without history , how can one define a base to start? Without a reference point, how can one choose which path is the better way to go? Without knowledge, how can one form poignant and critical answers or celebrate the small victories in this struggle? Please be patient. By this posting's finish, we will be caught up to the week to week stuff and will get into the nitty gritty cancer treatment stuff.
July 4th. We land and wonder down to baggage claim. As we get to our carousel, we are greeted by "Bob" holding a little sign with our names on it. Bob's got that great Chicago accent made famous by the SNL greatest football fans and their line "Da Bears" and "Mr Mike Ditka". Bob tells us he's our driver and will be taking us to our hotel and proceeds to grab out bags and scuttles us off to a big stretch limo. Inside, there are a few more couples and singles all heading off to the hotel. I thought the town the clinic was in was cose to Chicago. Finds out, Zion, Il, is the last town on the northeast coast of Illinois. 1.5 miles farther north, and your in Wisconsin. Ok, so much for a little site seeing on Michigan Ave. Matter of fact, little Zion, Il is an armpit of a town. It was dry up to 4 years ago, there are very few restaurants (Applebees is the High End cousine) and no bars to be found. Guess its a good place to build a clinic, being the big fish in a small town gives you a lot of clout!
July 5th. First appointment of the day is registration. At 7:45am, it's already 90º outside on it's way to record heat of 104º. Maybe being inside in the air conditioning will be a good thing.
Registration is a fiasco. It's probably the one place at CTCA that need a complete overhaul on how to handle patients. I get a hospital wrist band with bar codes for accounting, we each get a name badge which translates into free food in the commissary, and I get a leather business travelling attache for all the paperwork and business cards I am about to receive. We get hooked up with our "tour guide" or as CTCA call's them, the Care Team Consultant. He drags us off to our next appoint. with my nurse navigator. This person then describes the process, in medical terms, of what the next few days will entail. She is a nurse and knows her shit. She then passes us off at our next stop, meeting first doctor of the day. This gentleman oversees the testing period and records management to make sure all the pertinent information is available system wide for anyone to pull up. We hand him the wad of testing info we have had completed in the past 3 weeks. Big smile come to his face and claims we just lopped off 3 days of visit because we had all this info. He then gives me a lame once over with the stethoscope
and infos us we can head off to our next appointment. It's 10am, next appointment, 2pm. We are sad.
So we go for a walk in the 100º temps, not very long mind you. But it did kill 45 minutes. We then head down to lunch room. Very nice salad buffet filled with goodies that are all organically grown. Hot foods and a grill, drinks and deserts. I get a salad, you half to weigh it to pay for it, and the cashier looks at me as says "Ok, thanks" No one told us how the food thing works so I stand there looking like an idiot and this little lady behind me says in the sweetest little voice "move it asshole, your done, it's paid for by the hospital, get out of the way!" Thanks Grandma, I hope you choke on the tapioka!
And this is how the next 2 days goes. It's a giant meet and greet; 2pm Meet your Radiologist, 3pm Meet your Homeopath Care Giver, 4pm Meet the Dietition. End of day. Next day, same thing. 9am
meet the Hemotologist, meet the G.I. guy, meet the cardiologist, lunch. Then back with Nurse Navigation and then we're to meet with a Chaplin and a Life Quality person. I'm all meet & greated out. next meeting is actually medical finally. Monday morning meet with radiologist again for an exam and figure out direction for treatment. What? Treatment? They said the magic word. TREATMENT.
OMG, Kim and I are estatic. July 9th and we're talking treatments. If I'd have stayed at home at Wake Forest, we'd still be in the discovery period. Here at CTCA, boom, lets move on - treatment is needed fast!
WE like this place.
So Monday Morning we go in to see Dr Chang, my Radiologist. He again does the obligatory stethoscope exterior listen. He then asked if I had ever had a Endoscopy? My wife giggled in the corner. I said I had. But Dr Chang says there were no information in charts, we do one now. Yippie.
Out comes the Cadalac of Endoscopy Sex Toys. Dr Changs toy also has a HD Camera so while he inserts the thing down through my nose and into my throat, I'm getting to see it on a big flat screen monitor hanging behind Dr Chang in full 1080P Digital quality. Technology, ya got to love it. And because my throat is on the big screen, I loose all track of time how long Dr Chang was rooting away. He was also giving the tour of Jay's Throat a narrative, explaining what and where things were, all the while he's looking for that primary tumor. It was like being on the Discovery Channel!
Finally he gets excited, or as excited as a little Korean guy can get while having a large black plastic tube shoved down my throat. He say "look, here Tumor, on your tonsil". All looks like redish pinkish goop to me but I go along with him, he does have the Sex toy rammed down my nose. Now see starts taking pictures like a Japanese tourist at Disneyland. Frontals, Sides, even tried to get one from the back (that didn't go very well with the gag reflex). Finally, he backs the Sex Toy out and says that this was good, I see him tomorrow. And with that he leaves. Odd little man.
Besides, now I am late for my Hemo-Oncologist appointment. I hate that. Drives me nuts to be late, especially for a Specialist appointment.
So off to Dr Levin's office on the 3rd floor (Dr Chang is on the Ground floor.) To say that Dr Chang is an odd little man is a very unkind statement. Compared to Levin, Chang is a nice quite guy. Levin is one of those really smart people in the world that walk the line between insanity on one side and brilliance on the other. He is truly the definition of Odd Little Man. However, he is now in charge of my case. Apparently, the Hemo guy is the overseer in Head and Neck Cancers at this clinic. So I have to deal with this very bright guy and his quirky mental flow pattern. It's tough, he has a nurse that actually fills in the blanks while he is talking. Nurse Pam is a Saint. Anyway, Levin finds out Chang's taken pictures and has made a decision on his radiation approach and Levin is a little tweaked he wasn't in on discovery. He comes up with a Chemo treatment plan and radiology will just have to follow suit.
It's like watching 2 little boys in a sandbox each with there own toy. What ever, we got a plan and we are starting when? Levin says Chemo's to start next week Tuesday (the 17th), lab draws on Mondays. Chang needs a week of computer simulation for the Tomo Radiation Treatments to begin on the 23rd of July. Cool, dates and everything, a plan. I am very happy, anxious and nervous, but happy.
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