my other job is my cancer
i spent most of friday dealing with the nuances of my other job, my cancer. in the morning i tended to a handful of bills from the hospital. earlier this year i forgot that my copay for non-routine imaging (CT, PET scans, MRIs) had jumped to $80. i was still paying the $40 it used to be. so, i went back through my records to be sure i wasn't being billed too much - since i had already paid half the fee in most cases, i should only owe the other half. the hospital actually had everything straight in this case, so i wrote the checks and sent them off. then i was headed to the hospital myself. scan day.
i never received word that i had been scheduled for a setup planning session for radiation therapy at 10am. my doctor called at 11 wondering where i was; seeing me was to be the highlight of his day. apparently this confusion happens more often than the radiation oncologists would like to admit; there isn't really a system in place for calling patients and reminding them of these sessions. we get phone calls reminding us of our MRIs and PET scans from the radiology department, but that is separate from rad onc and thus, no phone call. we made good time getting to the hospital, though, and by noon i was gowned up and ready for the planning session.
i was happy to see one of my radiation therapists working in the planning room; i hadn't seen her in a year - hard to believe my treatments ended a year ago april 30. the date passed without me even thinking about it. we caught up a bit - she was sad to see me there, but glad i was in good shape and spirits. i told her about my recent travels and she told me about training for the new machines they will have in the perelman center, the new building that is opening soon.
it will house most outpatient surgeries, offices for lots of doctors, CT, MRI, PET machines, linear accelerators (for radiation treatment), a new proton beam machine for treating cancer (one of only five or six in the country), and the hematology/oncology divisions - along with some other divisions like cardiology and GI. the first time mom and i went to the hospital on october 16, 2006, it was just a hole in the ground. we watched as the first beams were put in, saw the christmas tree atop the last beam laid around the holidays in 2006, saw windows go in, and now they are working on the stuff on the inside - we can't see it. it will be exciting, in a dorky, cancer-patient way, to see the shiny new machines and new digs for all my docs.
anyway, the planning session went quickly. basically it is a CT scan without contrast. the doctor looks at it and compares it to other scans and makes sure i am lined up properly for radiation treatment. the therapists use the tattoos on my front and sides to line me up with lasers. they make small adjustments by tugging on a sheet that i am lying on and by moving the "table" (actually only as wide as my body, rock hard, it is kind of like a back board in an ambulance) up or down. i came prepared for my scans in sweats - no metal in the clothing means no need for a drafty hospital gown - but for this one i needed the gown up top because my tattoos obviously can't be seen through my clothes. lucky for me, they were able to use the tattoos i already have and i didn't have to get any new ones.
once the planning session was over mom and i headed up to the nuclear medicine department for my PET scan. almost immediately i was called in for my injection of the radioactive glucose and my tasty snack of barium milkshake. i knew i would have to sit still with little talking for about an hour; it went quickly and i was called in for the scan. unfortunately, the last time i had a PET scan i waited 90 minutes before the scan (it was crowded that day) and one of the technicians caught this on my chart and sent me back out for another 30 minutes of waiting. they keep the time the same so the glucose has the same uptake time; if they did it sooner, less glucose might be taken up and it might create a false-negative; too much time and the opposite problem might pop up. my general feeling is that the PET scan is a really good tool but there is still a chance for false positives - inflammation from a cold or exercise might show up, too. in any event, the scan takes about 40 minutes and i was nestled cozily under a blanket and fell promptly asleep. i just focus myself on lying on the dock at the cabin in the summertime, and i drift right off to the hum of the machines like the lapping of the waves.
i walked out of the scanning room a little groggily and i could see the concern in mom's face - what did they do to you in there? i told her i had taken a nap, and she relaxed a bit. i remember being so scared about my first PET scan - and so nervous about subsequent ones. yesterday my cancer experience was showing through, after all. i've learned that no matter how nervous i get about the scans, the truth doesn't come until a couple of days later, so why not put off worrying and all the wasting of energy until a later day? mom had been nice enough to go buy a sandwich for me - it was now 3:30 and i hadn't eaten since 8am. we went outside to eat and then it was back to the basement for the MRI.
things moved surprisingly quickly in the radiology department and only about fifteen minutes after checking in we were being ushered to the super-secret, hidden away in the dungeon location of the MRI machines. just minutes after that i was lying on the table, shoving earplugs into my ears and looking forward to another 30 minute nap. with about ten minutes to go, they pull me out of the machine and quickly inject me with the gadmium, the contrast dye used for MRIs of the brain (they were looking for brain (metastases) mets, or cancer that has moved to my brain). ten more minutes and we were on our way home.
my cold had gotten worse through the day and i was coughing now, tired, and stuffy. it felt great, once again, to reach the roof of the parking garage and go home. another day playing cancer patient, front row-center, in the books.
and today, i'm left wondering why cancer patients can't get a "get out of jail free" card when it comes to the common cold, among other things (traffic, taxes, waiting in lines, insomnia, eating bad-tasting food). my head feels like it isn't quite attached to my body, and my numb spots leftover from surgery are starting to hurt from the coughing. i'm off to have some more orange juice and take a nap - all in preparation for the chemo i might or might not have (depending what these scans showed and what the docs want to do next) on tuesday.
i never received word that i had been scheduled for a setup planning session for radiation therapy at 10am. my doctor called at 11 wondering where i was; seeing me was to be the highlight of his day. apparently this confusion happens more often than the radiation oncologists would like to admit; there isn't really a system in place for calling patients and reminding them of these sessions. we get phone calls reminding us of our MRIs and PET scans from the radiology department, but that is separate from rad onc and thus, no phone call. we made good time getting to the hospital, though, and by noon i was gowned up and ready for the planning session.
i was happy to see one of my radiation therapists working in the planning room; i hadn't seen her in a year - hard to believe my treatments ended a year ago april 30. the date passed without me even thinking about it. we caught up a bit - she was sad to see me there, but glad i was in good shape and spirits. i told her about my recent travels and she told me about training for the new machines they will have in the perelman center, the new building that is opening soon.
it will house most outpatient surgeries, offices for lots of doctors, CT, MRI, PET machines, linear accelerators (for radiation treatment), a new proton beam machine for treating cancer (one of only five or six in the country), and the hematology/oncology divisions - along with some other divisions like cardiology and GI. the first time mom and i went to the hospital on october 16, 2006, it was just a hole in the ground. we watched as the first beams were put in, saw the christmas tree atop the last beam laid around the holidays in 2006, saw windows go in, and now they are working on the stuff on the inside - we can't see it. it will be exciting, in a dorky, cancer-patient way, to see the shiny new machines and new digs for all my docs.
anyway, the planning session went quickly. basically it is a CT scan without contrast. the doctor looks at it and compares it to other scans and makes sure i am lined up properly for radiation treatment. the therapists use the tattoos on my front and sides to line me up with lasers. they make small adjustments by tugging on a sheet that i am lying on and by moving the "table" (actually only as wide as my body, rock hard, it is kind of like a back board in an ambulance) up or down. i came prepared for my scans in sweats - no metal in the clothing means no need for a drafty hospital gown - but for this one i needed the gown up top because my tattoos obviously can't be seen through my clothes. lucky for me, they were able to use the tattoos i already have and i didn't have to get any new ones.
once the planning session was over mom and i headed up to the nuclear medicine department for my PET scan. almost immediately i was called in for my injection of the radioactive glucose and my tasty snack of barium milkshake. i knew i would have to sit still with little talking for about an hour; it went quickly and i was called in for the scan. unfortunately, the last time i had a PET scan i waited 90 minutes before the scan (it was crowded that day) and one of the technicians caught this on my chart and sent me back out for another 30 minutes of waiting. they keep the time the same so the glucose has the same uptake time; if they did it sooner, less glucose might be taken up and it might create a false-negative; too much time and the opposite problem might pop up. my general feeling is that the PET scan is a really good tool but there is still a chance for false positives - inflammation from a cold or exercise might show up, too. in any event, the scan takes about 40 minutes and i was nestled cozily under a blanket and fell promptly asleep. i just focus myself on lying on the dock at the cabin in the summertime, and i drift right off to the hum of the machines like the lapping of the waves.
i walked out of the scanning room a little groggily and i could see the concern in mom's face - what did they do to you in there? i told her i had taken a nap, and she relaxed a bit. i remember being so scared about my first PET scan - and so nervous about subsequent ones. yesterday my cancer experience was showing through, after all. i've learned that no matter how nervous i get about the scans, the truth doesn't come until a couple of days later, so why not put off worrying and all the wasting of energy until a later day? mom had been nice enough to go buy a sandwich for me - it was now 3:30 and i hadn't eaten since 8am. we went outside to eat and then it was back to the basement for the MRI.
things moved surprisingly quickly in the radiology department and only about fifteen minutes after checking in we were being ushered to the super-secret, hidden away in the dungeon location of the MRI machines. just minutes after that i was lying on the table, shoving earplugs into my ears and looking forward to another 30 minute nap. with about ten minutes to go, they pull me out of the machine and quickly inject me with the gadmium, the contrast dye used for MRIs of the brain (they were looking for brain (metastases) mets, or cancer that has moved to my brain). ten more minutes and we were on our way home.
my cold had gotten worse through the day and i was coughing now, tired, and stuffy. it felt great, once again, to reach the roof of the parking garage and go home. another day playing cancer patient, front row-center, in the books.
and today, i'm left wondering why cancer patients can't get a "get out of jail free" card when it comes to the common cold, among other things (traffic, taxes, waiting in lines, insomnia, eating bad-tasting food). my head feels like it isn't quite attached to my body, and my numb spots leftover from surgery are starting to hurt from the coughing. i'm off to have some more orange juice and take a nap - all in preparation for the chemo i might or might not have (depending what these scans showed and what the docs want to do next) on tuesday.
Comments
You are very strong. I'm praying you'll get the results you are looking for!