Today finally was the day that Dante started the MIBG radiation treatments. I found this out late last night when, he finally decided to come in from a chinese food run. Luckily I had already put in for the next two days to be off and so I was able to accompany him to Sloan.
IT has always been interesting to note people's reactions when you are caught up in the midst of dealing with this 'cancer" situation as well as the things relating to it. As was today you will get some that will express concern for you and (dante's) well being and who will exhort you to take care and rest(both of us) then you have the people who for whatever reason were expecting you to do something and can't understand when you try and explain to them that you are severely time constrained. Can't understand why you can't fit whats going on into a scheduled time slot, or in the case of an irate parent, can't and won't accept that you can't run all over town all day and turn around and do it ONE MORE GIN, without passing out from exhaustion.
Dante's appointment was scheduled for 1PM. However since the actual medication had to be brought in via special courier, it wound up not getting there until 2PM. You have to picture a hand truck with this contraption on it looks like shelves with this desktop platform and on it is a lead lined case with a led panel and a console panel with numbered/lettered buttons. It looked like one of those bombs you see on tv (like 24) that are time bombs set to go off...
The lead lined case thing is offputting as well. Seeing the technician avoiding walking too close to this contraption did not inspire confidence either. However, we set off as they had a special area in the hospital for doing this proceedure. Think of long winding hallways....i morbidly thought of the prisoner taking that last walk on death row.
We get to the room and its got "Danger Radiation" signs all over the doors...(which lock by the way) Its set up with these mini walls cubicle style, except these walls are lead lined. There was an attempt at normalcy, there was a tv a dvd player, some dvd's a radio(boom box) and a fridge with various juices and softdrinks. One of the nurses went and got a lunch for dante (tuna fish sandwich) which of course he turned his nose up at(typical dante move)
The treatment actually consists of them hooking dante up to a blood pressure machine and an infusion machine. His pressure has to be monitored while the medication is being administered. The medication comes in a tube(syringe) the thickness of a length of kielbasa sausage. and is kept under the top half of the "lead lined box". The bottom half of the box has the LED panel and buttons to set up the rate/dosage.
Basically they run a line intravenously and that is how the medicine is given to him. I say medicine but its really Radioactive isotope(s). Which is why there were DANGER, Radioactive Treatment in progress signs all over the place...and why when people wandered in (doctors and quite frequently) they would keep their distance.
Once dante signed off on the consent forms they started the machine to give him the dose....right around then the Radiation Chief of Staff came in to discuss what was happening now and what to expect (to a degree) afterwards.
Let's see.....i didnt pass out when they said he actually (dante) would be radioactive for a time right after the treatment
I didnt pass out when they told me that i should maintain 3' distance from him for at least 24 hours
I didnt pass out when they told me that he should probably use disposable eating utensils and plates for 24 hours at least because of residual radiation.
I didnt even pass out when they gave me cards to present if need be to anyone from homeland security(no i am so not kidding) if they picked up the radiation on him (which they could) which would explain that he just received treatment
I did catch a headache when the Radiation (person) produced a geiger counter to measure the radiation near dante , and told me that i would want to stay on the other side of at least one of the lead "cubicle walls" because of the radiation (risk of exposure)
My stomach gave up when the "doctors" passed through to see this "marvel" and were standing behind me discussing how "neat" the machine that administered the dosage was - and how they used to have to do it by hand...
I was given a printout of all the appointments, medications and times that dante would have to keep up with. Its so long I couldnt even get into reading it. I will have to put it in my calendar or we will never remember any of that stuff...
We actually were trying to watch Dick and Jane, i couldnt really get into it that much since the sound was low and i was not allowed to get closer than 5 feet away from him...They tried to get me to sit down one stall over and i was like naw im good...i had a flash of a thought thinking im not going to act like my son is a pariah and we pretty much chatted all the way there on the train - i wasnt going to "stop" at that point.
My point was to try and keep his mind off of all this that was going on by if nothing else keeping up some conversation...i knew he was nervous....and i knew he wasnt feeling all that great because he told me so when we first got there and i know dante if he tells you he doesnt feel well he DOESNT feel well at all.
Im probably going to write more about this but right now my head is spinning and i have an ignorant parent who could care less about whats going on over here...who i need to call and hopefully not curse out...
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