Even more hoops
G'day all!
I saw the multidisciplinary clinic today (I don't think I've managed once to type disciplinary out without making a boo boo or taking five minutes to type it). They've discussed my case and agreed that I am an excellent case for chemo and also for the study.
So tell me something I don't know!
George, the oncologist I saw (who just so happens to be of Asian origin and looks about 15 but given he's done 12 years of higher education to be an oncologist means he has to be at least 27, assuming he finished school at 15 cos he is a clever clogs), outlined the first lot of treatment (chemo, four cycles of taxotere and four cycles of FEC, possibly not in that order). He said we are going for a CURE!
Why?
Cos my CT scan and bone screen yesterday were clear!
HOO-BLASTED-RAY!
I have been living in fear that my liver has mets or my bones (especially since I have a lump on the end of a floating rib but the chiro says that is likely to be because the ribs on the other side were rotated inwards, putting more pressure on the lumpy side, causing it to be lumpy. The lump is a LOT smaller now so it was probably some weird injury like I am good at giving myself). Metastasis means no cure, only ongoing management at best.
But I am not starting chemo yet. Oh no. If I am part of the study, then I enrol on Thursday, then have to have PET scan (part of the study) and they will arrange the chemo start date once the scan is done. Plus I need a gated blood pool study or some such to make sure my heart can withstand the damaging effects of one of the chemo drugs. I should be on chemo by the start of Feb if things work out. I hope so cos I want to hammer this thing before it hammers me.
Plus given my mum died of cancer and so did her sister and I've presented at a young age with a relatively rare (15% of breast cancer population) tumour, I should go to the familial cancer clinic too.
But I am in the system. So that is a good start. And I feel much happer now that the scans are clear. I'm not so happy about how sore I am after the CT scan! I had to put my arms over my head, stretched out and the under-used muscles of my shoulderblades and lats are telling me ALL about it today. Like non-stop, and sleeping last night was really difficult. plus whatever is in the iodinated solution you have to drink for the CT scan (not the contrast medium that the SF probe puts into you) made me bloat up like a balloon for a couple of hours. Farty-fart-fart-fart!
For those of you who would like to know more about my experience of the scanning process, heretis!
You have to drink this icky pretty pale green fluid an hour before the CT scan. I think it is iodinated. It is a bit bitter and not very nice but I drank all 500ml or so of it like a good girl. I read my consent form and ticked boxes and signed it *after* drinking the solution. Then I waited. Then I changed into a hospital gown and dressing gown. Then I waited. I waited with a lady a bit older than me, a man who was into his 50s and a businessman probably in his late 40s (I knew the latter was a businessman because of his shoes and his suit neatly folded into his basket). I got lots of knitting done - the heel of a sock and a third of a chemo cap. The radioactive stuff for the bone scan was injected and the little catheter was left in my arm for the contrast material for the CT scan. Then I got called in. The CT scanner is a new one, GE branded, very nice, a donut with a narrow bed in the middle. I had to lie down on my back, legs supported by a triangular cushion, back on another, arms over my head and not exactly well supported. Stay still, let the machine do its stuff.
Then the CT machine is started up. The xray head/receiver starts whirling around. You get a laser scan first as the bed moves through the donut, god knows why. You need to keep your eyes shut for this bit unless you *want* to go blind. Then you wait a bit and it says, "Breathe in." The machine gives you instructions. A green smiley face lights up whenever you can breathe or you should breathe in. Then it says, "Hold your breath," and the green smiley man turns off and the orange puffy-faced-holding-my-breath man turns on. So you get visual and aural cues as to what you should be doing. I had two scans. They take about 10 seconds each.
I was hooked up onto the contrast dye machine (OMG, looked like something out of an SF alien abduction movie, had a HUGE syringe enclosure, a syringe-y thing that was the size of a soft drink can but longer and a green light that wom-wommed at the non-syringe end, and a tube leading out of the business end). My arm had to sit up for this bit rather than behind my head. I asked the technician if I was going to have the anal probe as well. She said I wasn't having that today. *phew* I could expect the contrast dye to give me a warm flush, a feeling like I had just "gone to the toilet" and a metallic taste in my mouth.
A specialist rushed in, looked at me and said,"Huh" and the techs said, "This is the wrong woman." He rushed out again. The technicians said, "Be glad you aren't having what she is having." Most mysterious. I guess she was getting the anal probe...
The machine whirled again as it sucked me into its maw. That is when the contrast medium is pumped in I guess. The warm bit happened but I didn't feel really hot like some people do, the "gone to the toilet" translates to "just wet myself" but I hadn't cos all sphincters reported closed and skin said "not really wet just sorta tingly feeling" and the metallic taste could've been the aftertaste of the iodinated solution. "Breathe in. Hold your breath." One last pass and it was done!
12 minutes I was in there, I think. Waited for over two hours cos they were running a little late. $660 less 10 cents.
Then I was allowed to get dressed and go home for lunch, back at two pm for the bone scan.
"Empty your bladder," was my first instruction for the bone scan. OK! "Come back into the room, you don't need to get undressed, and lie down on the bed." OK! "It will take about half an hour. You have to be still." Yikes, OK! I get twitchy as soon as I am told to be still. The businessman showed up for his scan and smiled a little nervously at me, recognising me from the wait in the morning. He looked like a nice bloke and I hope his results are good.
Relieved of bladder contents, glasses and shoes, I lay on the bed, which moved into position. The scanning plate is probably 75 cm square and hangs over you on a gantry that lifts up and down depending on your thickness. As the scan started, it became quite obvious that my nose is the highest point on my body when I am lying on my back. This may not be the case for everyone. It was quite relaxing at first if I shut my eyes (having a big square thing 1cm from my nose was challenging), but then I realised that I could see my own bones on a monitor if I rolled my eyes to the right. I couldn't see any bright points (but I didn't have my glasses on either). When it moved over my pelvis, my bladder and loops of bowel lit up like a Christmas tree. One guess as to how the tracer is excreted! Nothing showed up on my legs or knees or feet, though my knees were brighter than my shins or femurs cos they have more bone and I guess more bone means more tracer. Finally the scan was done, and I was rather pleased cos one of my knees was trying to pop (my knees are very talkative) and a calf was getting twitchy. Then I was allowed to go.
As I was paying the bill ($1,200!), a friend walked up and said "Hi!" It was nice to have a chat with her husband whilst she was getting a mammogram, etc. If I can save one other person from going through this, my job is done!
One day I will have pics of my knitting, but not today. Soon, soon now!
anon!
I saw the multidisciplinary clinic today (I don't think I've managed once to type disciplinary out without making a boo boo or taking five minutes to type it). They've discussed my case and agreed that I am an excellent case for chemo and also for the study.
So tell me something I don't know!
George, the oncologist I saw (who just so happens to be of Asian origin and looks about 15 but given he's done 12 years of higher education to be an oncologist means he has to be at least 27, assuming he finished school at 15 cos he is a clever clogs), outlined the first lot of treatment (chemo, four cycles of taxotere and four cycles of FEC, possibly not in that order). He said we are going for a CURE!
Why?
Cos my CT scan and bone screen yesterday were clear!
HOO-BLASTED-RAY!
I have been living in fear that my liver has mets or my bones (especially since I have a lump on the end of a floating rib but the chiro says that is likely to be because the ribs on the other side were rotated inwards, putting more pressure on the lumpy side, causing it to be lumpy. The lump is a LOT smaller now so it was probably some weird injury like I am good at giving myself). Metastasis means no cure, only ongoing management at best.
But I am not starting chemo yet. Oh no. If I am part of the study, then I enrol on Thursday, then have to have PET scan (part of the study) and they will arrange the chemo start date once the scan is done. Plus I need a gated blood pool study or some such to make sure my heart can withstand the damaging effects of one of the chemo drugs. I should be on chemo by the start of Feb if things work out. I hope so cos I want to hammer this thing before it hammers me.
Plus given my mum died of cancer and so did her sister and I've presented at a young age with a relatively rare (15% of breast cancer population) tumour, I should go to the familial cancer clinic too.
But I am in the system. So that is a good start. And I feel much happer now that the scans are clear. I'm not so happy about how sore I am after the CT scan! I had to put my arms over my head, stretched out and the under-used muscles of my shoulderblades and lats are telling me ALL about it today. Like non-stop, and sleeping last night was really difficult. plus whatever is in the iodinated solution you have to drink for the CT scan (not the contrast medium that the SF probe puts into you) made me bloat up like a balloon for a couple of hours. Farty-fart-fart-fart!
For those of you who would like to know more about my experience of the scanning process, heretis!
You have to drink this icky pretty pale green fluid an hour before the CT scan. I think it is iodinated. It is a bit bitter and not very nice but I drank all 500ml or so of it like a good girl. I read my consent form and ticked boxes and signed it *after* drinking the solution. Then I waited. Then I changed into a hospital gown and dressing gown. Then I waited. I waited with a lady a bit older than me, a man who was into his 50s and a businessman probably in his late 40s (I knew the latter was a businessman because of his shoes and his suit neatly folded into his basket). I got lots of knitting done - the heel of a sock and a third of a chemo cap. The radioactive stuff for the bone scan was injected and the little catheter was left in my arm for the contrast material for the CT scan. Then I got called in. The CT scanner is a new one, GE branded, very nice, a donut with a narrow bed in the middle. I had to lie down on my back, legs supported by a triangular cushion, back on another, arms over my head and not exactly well supported. Stay still, let the machine do its stuff.
Then the CT machine is started up. The xray head/receiver starts whirling around. You get a laser scan first as the bed moves through the donut, god knows why. You need to keep your eyes shut for this bit unless you *want* to go blind. Then you wait a bit and it says, "Breathe in." The machine gives you instructions. A green smiley face lights up whenever you can breathe or you should breathe in. Then it says, "Hold your breath," and the green smiley man turns off and the orange puffy-faced-holding-my-breath man turns on. So you get visual and aural cues as to what you should be doing. I had two scans. They take about 10 seconds each.
I was hooked up onto the contrast dye machine (OMG, looked like something out of an SF alien abduction movie, had a HUGE syringe enclosure, a syringe-y thing that was the size of a soft drink can but longer and a green light that wom-wommed at the non-syringe end, and a tube leading out of the business end). My arm had to sit up for this bit rather than behind my head. I asked the technician if I was going to have the anal probe as well. She said I wasn't having that today. *phew* I could expect the contrast dye to give me a warm flush, a feeling like I had just "gone to the toilet" and a metallic taste in my mouth.
A specialist rushed in, looked at me and said,"Huh" and the techs said, "This is the wrong woman." He rushed out again. The technicians said, "Be glad you aren't having what she is having." Most mysterious. I guess she was getting the anal probe...
The machine whirled again as it sucked me into its maw. That is when the contrast medium is pumped in I guess. The warm bit happened but I didn't feel really hot like some people do, the "gone to the toilet" translates to "just wet myself" but I hadn't cos all sphincters reported closed and skin said "not really wet just sorta tingly feeling" and the metallic taste could've been the aftertaste of the iodinated solution. "Breathe in. Hold your breath." One last pass and it was done!
12 minutes I was in there, I think. Waited for over two hours cos they were running a little late. $660 less 10 cents.
Then I was allowed to get dressed and go home for lunch, back at two pm for the bone scan.
"Empty your bladder," was my first instruction for the bone scan. OK! "Come back into the room, you don't need to get undressed, and lie down on the bed." OK! "It will take about half an hour. You have to be still." Yikes, OK! I get twitchy as soon as I am told to be still. The businessman showed up for his scan and smiled a little nervously at me, recognising me from the wait in the morning. He looked like a nice bloke and I hope his results are good.
Relieved of bladder contents, glasses and shoes, I lay on the bed, which moved into position. The scanning plate is probably 75 cm square and hangs over you on a gantry that lifts up and down depending on your thickness. As the scan started, it became quite obvious that my nose is the highest point on my body when I am lying on my back. This may not be the case for everyone. It was quite relaxing at first if I shut my eyes (having a big square thing 1cm from my nose was challenging), but then I realised that I could see my own bones on a monitor if I rolled my eyes to the right. I couldn't see any bright points (but I didn't have my glasses on either). When it moved over my pelvis, my bladder and loops of bowel lit up like a Christmas tree. One guess as to how the tracer is excreted! Nothing showed up on my legs or knees or feet, though my knees were brighter than my shins or femurs cos they have more bone and I guess more bone means more tracer. Finally the scan was done, and I was rather pleased cos one of my knees was trying to pop (my knees are very talkative) and a calf was getting twitchy. Then I was allowed to go.
As I was paying the bill ($1,200!), a friend walked up and said "Hi!" It was nice to have a chat with her husband whilst she was getting a mammogram, etc. If I can save one other person from going through this, my job is done!
One day I will have pics of my knitting, but not today. Soon, soon now!
anon!
So glad to her that your scans were clear and welcome back to OZ .Probably not the kind of welcoming committee that you would like but it does sound like you are in good hands .
ReplyDeleteWow - that sounds like quite a day; and most promising! I am greatly heartened on your behalf to hear such encouraging news, hugs, nat
ReplyDeleteOh Congratulations, so fantastic that there are no mets, such a relief for you. Shame it took so long for your appointments but at least you got some knitting in!
ReplyDeleteGreat news Lynne!!And thank you for such an interesting insite into the medical side,Hugs!!
ReplyDeleteSoooo glad to hear the scans were clear. Going for that cure! You can do it!
ReplyDeleteOh my gosh. I haven't read the whole post yet but having gotten to the "SCANS ARE CLEAR" bit I had to comment. I'm so relieved for you. I know its a long road ahead still but it was such an uplifting and lovely thing to read.
ReplyDeleteHugs!
Finally some good news. Hope that trend continues.
ReplyDeleteWhat great news about the scans. Also your blow by blow account of the whole process was very interesting. Isn't it great to be a knitter? I usually don't mind waiting in Dr or Dentists offices because it just means more knitting time.
ReplyDeleteI'm curious about the cash on the barrel head --- do you somehow get reimbursed for that? What would happen if you couldn't pay that kind of money up front? Although originally from OZ, I'm pretty clueless about the health care system (I've been gone for 23 years)so it would be very enlightening if you were to blog about how the health care system works.
Sending lots of good wishes your way.
'Multidisciplinary' sounds naughty.
ReplyDeleteFabulous news!! So happy to hear you are not beyond hope, medically speaking. Oh yes, the big whirly machine!! I had radioactive markers and I wasn't allowed to hug the Labradors for a few hours. And that weird warm wet tingly feeling- I got that. Knitting always calms my savage breast when I am waiting, be prepared, your life will now consist of a Lot Of Waiting!! At our Clinic, the Red Cross comes round and gives us cups of tea, biscuits and lollies!!
ReplyDeleteThis is great to hear! Now, when do you need us to organise the bank robbery for the bill paying?
ReplyDeleteYAY!!! So good to hear those results. But I have no idea what a gantry is - so either they only occur in Oz or I am vocabularically challenged. :)
ReplyDeleteI'm so glad the CT and bone scans were clear. The waiting on those results must have been so hard to deal with. Hugs.
ReplyDeleteWhat terrific news, Lynne! So happy things are looking so promising. And thanks for the great descriptions of the scans...ain't technology wunnerful?!
ReplyDelete