So it's about what we feared - a recurrence in seven lymph nodes.
From the look of it, it's the same cancer as before, creeping back.
At this point, there are not good odds for a cure, so we are starting
to think of it as a chronic disease instead of a cureable one.
There's always a small chance of a cure - the "long tail" in the
statistics, but it's unlikely. (For those of you that like numbers,
let me know, and I'll tell you what I know, and point you to the
studies I've already read.)
I start chemo again soon, possibly this week, certainly next. I'm
having a new port put in a week from today, so I don't have to be
stuck with their little needles every week. This regimen will be
Taxol and Avastin. Taxol has all the usual caveats, hair loss,
nausea, blah de blah. Avastin is a monoclonal antibody (aren't I
fauncy) that targets the blood vessels to starve tumors. It's the hot
and fancy new treatment, and increases the response rate considerably.
As for how you all can help - I'm doing okay, other than the waking upat 3 am bidness, which is a pain. The support people are currently more in need of support than I am - send Tess your love, and give Kevin the opportunity to vent, or preferably go out and kick things and strangle small animals.
Lots of love,
grun
Tuesday, October 28, 2008
Saturday, October 25, 2008
[Insert ugly emoticon here]
The preliminary biopsy results are "consistent with a metastatic
recurrence of breast cancer". As of the moment, that's pretty much all we know - I got this from an on-call doc whom I don't know, not from any of the regular doctors. I go in to talk with my oncologist on Monday, and then will have a much better idea of what the next line of treatment is, and whether it's possible to cure it, or only to
control it.
I'm doing OK, the wert and the imp are having a harder time. I haven't used the word "metastatic" with the imp yet, but she does know that the breast cancer has come back.
I'm glad I nagged my doctor to take a second look at the lymph nodes....
recurrence of breast cancer". As of the moment, that's pretty much all we know - I got this from an on-call doc whom I don't know, not from any of the regular doctors. I go in to talk with my oncologist on Monday, and then will have a much better idea of what the next line of treatment is, and whether it's possible to cure it, or only to
control it.
I'm doing OK, the wert and the imp are having a harder time. I haven't used the word "metastatic" with the imp yet, but she does know that the breast cancer has come back.
I'm glad I nagged my doctor to take a second look at the lymph nodes....
Friday, October 10, 2008
PET scan
"PET scan? What, are they looking for,
little cats and dogs inside you?
What fresh hell is this?
- wertperch
I had a PET scan on Wednesday morning, Oct. 8. The technical explanation, above, covers the imaging process - this is the more personal version.
The PET scan started out about 24 hours before the scan itself - I was not supposed to exercise. That meant I missed my Tuesday morning dance class - major bummer. But even 24 hours after exercising hard, muscles are still uptaking glucose, so it can obscure the scan.
It also requires fasting for 6 hours beforehand, which I don't really mind, since I often skip breakfast. What it did mean, though, is that I couldn't have my usual Yorkshire tea, and arrived at the doctor's offices with a raging caffeine headache. I seriously considered cheating, and told the nurse with all the pokey pokey. She laughed, and said that actually, they've tested it, and that caffeine increases the glucose uptake, and it can, indeed, obscure the test. Glad I didn't cheat.
Injection of the radioactive glucose, and a command that I was not even allowed to READ for the next hour - so the muscles holding up the book wouldn't steal the glucose. Who knew? But along with a fairly hefty dose of Valium, I did what any stressed-out, worried, former cancer patient would do - I fell asleep in the chair for an hour.
Then they helped me stagger in to the PET machine, where I lay for 45 minutes while the machine buzzed and whirred. The only uncomfortable part is that I had to hold my arms up over my head the whole time - I didn't know it was possible to get muscle cramps in your shoulders.
Then, thank the [Powers That Be], they let me go, and wertperch walked me down the street to the local coffee and tea shop. Food! Strong. Black. Assam. It had to be one of the top three cups of tea I've had in my entire life.
~~~~~~~~~~
My doctor called me in the early afternoon.
Although I don't know a lot of the details, apparently there are seven locations that showed up as "hot spots" on the scan - two behind my right collarbone (the ones I was nagging the docs about in the first place), two in my right chest wall, and three along my mediastinum - adjacent to the trachea, apparently. Given the pattern, it's very unlikely that it's not a recurrence of the previous breast cancer.
I will know much more when I speak with my oncologist, this afternoon. From what I read, this is a regional recurrence - the next layer of lymph nodes out from the original cancer site.
Good things - if it is contained within the lymph nodes, it's a better prognosis than if they are new tumors. The fact that it's within the lymph nodes means my immune system is still fighting the cancer, and in addition that the cancer has not invaded any other organs. Breast cancer is most likely to go next to the brain, bones, liver and other abdominal soft tissue, and lungs. The fact that there is no evidence of any additional metabolic activity in any of those is a good sign.
Also, the fact that the CA-15-3 numbers are not up means that it's not invaded my bloodstream, so thus another indicator that it's contained within the lymph nodes.
Down side - wertperch and the imp are distraught.
I'm fairly philosophical about the whole thing. I'm VERY glad I bullied my docs into taking a second look at that beastly lymph node above my collarbone - proves my intuition is more accurate than their biopsies. (So there!)
The upside of having done the treatment before is that I know what to expect - although the treatment is brutal, I survived, I recovered, and was back to pretty much full health, barring the odd shoulder stiffness and reflux. I've also been getting more exercise, and the tougher I am going into it, the better the results usually are. Can you say, "durable"? And I even still have my own axe and teeth!
So I will add an update to this sometime over the weekend. Sometimes it takes me a few days to process all the medical gobbledygook, and then we'll all know what we are in store for. (For what we are in store?) - We'll all know what to expect.
Love to all,
grundoon
Monday, June 30, 2008
Friday, June 27, 2008
the mental dental waiting room
I missed a day of work today.
The reason I missed a day of work is that last night, as I talked on the phone to my darling Sumati, I felt a lump over my right collarbone. Lymph node, I think, and since that's how I detected the breast cancer in the first place, I thought, yeah, better get that one checked out.
Now, if you are not a cancer survivor, you may not quite know what this is like. Greg and I joke about it, he says, "yeah, I had cancer this morning, when I shaved. I cut myself, and when it wouldn't stop bleeding, I think, Oh my god, it's cancer coming back, and I'll have to have....." and your brain goes into overdrive imagining not just the next step, but the next 97 steps.
But the truth is, I'm not in a panic. I'm not in a snit. This time it's much more like being in the waiting room at the dentist's office.
I know it could be bad news. But it's a weird combination of slightly wired and, truthfully, bored. I know, I know, possible cancer recurrence, supraclavicular lymph node, more chemo, more radiation, blah blah blah, whatever. Yawn.
Honestly. I have a lot of fun planned for this weekend, and I am NOT going to miss any of it, or not enjoy any of it, because my brain has decided to kill me. Truth is, if I have a recurrence of the cancer, we'll deal with it. And I refuse, refuse, refuse to waste the next week fantasizing about what will happen if it's bad news.
Did you hear me, Powers That Be? I'm just going to live my life, and enjoy this celebration that's happening this weekend, and frankly, it's about Caroline, it's not about me, so let me just let it be about her. If worries come up, I'm going to pet them, tell them how cute and small they are, and send them on their merry way.
For you information junkies, I seem to have a supraclavicular lymph node that suddenly got large - around 2 centimeters. the oncologists' office sent me in for a fine needle biopsy, but that won't happen for a week - the large and grunchy gears of the medical establishment do not grind at a rapid rate, so now I'm in the Mental Dental Office for a week. So be it.
But in the mean time, tomorrow I'm going rafting, and Sunday is a party, and I think I'll just pass on the whole turning my brains to mush with worries for the time being.
The reason I missed a day of work is that last night, as I talked on the phone to my darling Sumati, I felt a lump over my right collarbone. Lymph node, I think, and since that's how I detected the breast cancer in the first place, I thought, yeah, better get that one checked out.
Now, if you are not a cancer survivor, you may not quite know what this is like. Greg and I joke about it, he says, "yeah, I had cancer this morning, when I shaved. I cut myself, and when it wouldn't stop bleeding, I think, Oh my god, it's cancer coming back, and I'll have to have....." and your brain goes into overdrive imagining not just the next step, but the next 97 steps.
But the truth is, I'm not in a panic. I'm not in a snit. This time it's much more like being in the waiting room at the dentist's office.
I know it could be bad news. But it's a weird combination of slightly wired and, truthfully, bored. I know, I know, possible cancer recurrence, supraclavicular lymph node, more chemo, more radiation, blah blah blah, whatever. Yawn.
Honestly. I have a lot of fun planned for this weekend, and I am NOT going to miss any of it, or not enjoy any of it, because my brain has decided to kill me. Truth is, if I have a recurrence of the cancer, we'll deal with it. And I refuse, refuse, refuse to waste the next week fantasizing about what will happen if it's bad news.
Did you hear me, Powers That Be? I'm just going to live my life, and enjoy this celebration that's happening this weekend, and frankly, it's about Caroline, it's not about me, so let me just let it be about her. If worries come up, I'm going to pet them, tell them how cute and small they are, and send them on their merry way.
For you information junkies, I seem to have a supraclavicular lymph node that suddenly got large - around 2 centimeters. the oncologists' office sent me in for a fine needle biopsy, but that won't happen for a week - the large and grunchy gears of the medical establishment do not grind at a rapid rate, so now I'm in the Mental Dental Office for a week. So be it.
But in the mean time, tomorrow I'm going rafting, and Sunday is a party, and I think I'll just pass on the whole turning my brains to mush with worries for the time being.
Wednesday, June 11, 2008
Thursday, October 11, 2007
Horace Phair
Friday
To everyone concerned - we are running anywhere from 2 hours to 6 days late, as usual.
Ashland, thank you for the slightly scary motel and the fantastic heart attack breakfast. Also tea. Also snow on ridges. In October.
Saturday
The way to go from the tea house to the saluthaus is - turn left out of driveway. Go 9 miles east on route 113. turn left onto I-5. Drive 700 miles north. (Do not stop for the boatgirls.) Turn right. Go in a spiral towards the saluthaus until you are there, and park.
Tracy and Peter, you rock my socks off, as always. I get to your house, and I simultaneously want to talk, drink tea, juggle, and fall asleep on the couch. This is a good thing. One of these days we are actually going to arrive, and NOT leave again for weeks, like we always threaten to. We will, however, arrive with boxes of food. This is also a good thing.
Crowd in General - sorry for running away when we first arrived, we had Crowdy Shyness, which we soon overcame.
Oak trees in the park - thanks for the acorns. I don't know what's happening with you, but I'm guessing it's going to be a hard winter. We appreciate your letting us know.
Horse chestnuts - thank you also, for being cool in pockets and not sneaky being thrown at people. Mostly. I was never there.
Walter and QXZ, Great to see you again, Valtah. Yes, you can interview us anytime, and we both promise that we won't be drunk the entire time. Only part. Also, we might get a visit from the saluthaus contingent in February, so if you need sunshine, that might be the time to do it. QXZ, you are a peach. It's wierd and cool to "meet" someone I feel like I've known for at least five years. We have a place saved for you in the Everything, Kansas Mansion of Doom. Or a yurt, if you are an antisocial type, take your pick.
panamaus, You're my wife now, Dave. Although that was quite the smooch you laid on me when we first arrived - are you sure there's something you're not telling me? We love you. You is good people, and we will keep you.
Sunday
ideath, cooking in your kitchen with you is truly great, and I didn't break any knives and/or cast iron pans - and even when my feet stick to the floor. I haven't faced my stripey socks yet. Also I learned some new recipes, and that's the biggest Pot O' Tofu I've ever seen.
I learned some useful things from you -
Making food on Sunday afternoon for lunch for hungry, vaguely hung over noders was a brilliant idea. However, making food on Sunday afternoon that was meant for about six people, and trying to stretch it to feed 18 was not entirely a success. Next time, plan ahead that We Will Be Providing Lunch for all and sundry two hours before the pie party, and cook for a mob. Also, remind me to feed myself, otherwise beer go to head and grundoon get stupid. I highly recommend sign up sheets.
Cronfrom, why has it taken us five frickin' years to play some music together? We, jointly, suck. When you come down in February, we will invite all the local plunkers to horrify you with our caconophy.
Ouroboros, despite your being descended from the Borgias, this time you FAILED to poison me, although you might have succeeded without the incredibly effective chaperonage of a nine-year-old. She was going to keep me in line, Vesper Martinis notwithstanding. Also, Gin Fizzes rock, more please.
Mitzi, huge apologies, I did not read your letter aloud. I have forwarded on to the people you mentioned, and will be happy to give it to anyone else. It was a HUGE party...we arrived late on Saturday, and had to leave early because Tess was scared of the loud drunk guys on the porch...and there was no great time for reading aloud. The dog ate my homework. Forgive. I will do better next time.
Musicians of the Creaking Planks, blessings on your firstborn(s). It was great to jam with all of you, and John, you are the first person ever to have guitar envy over my guitar. Send me your email address, and I'll tell you the story and where you can get one. Rowan, I wish I knew an accordion player locally, and next time I come to Vancouver I will come and bug you to play more music with me. The whole concept of seven instruments that were never meant to be played together is most excellent. Some afro-celtic-klezmer-zappa fusion, anyone?
Pornwatchers on the living room futon - You suck. Seriously. Next time, please think about your unintended, unwilling, uninterested, and/or underage audience. I'm all for sex positive, and all that, but I also REALLY don't want to explain a blue video to a nine year old. At least have enough sense to go into another room, where I, for one, do not have to walk past your screen to get to another room. Really, people, show some sense. If any of you ever have kids, I will seriously send them creepy shit anonymously in the mail.
You really pissed me off. Huge, groveling apologies will only be accepted if accompanied by boxes of chocolate, roses, and booze.
Notes to self -
Noders listen more carefully to announcements made when I am wielding a large, sharp kitchen knife. They also listen more carefully when I am making an announcement about food or booze. Remember this for future gatherings.
Also, people seem more willing to volunteer for dish-doing when I am knife-wielding. I have no idea why this is so, but those of you who washed up, many times, you are the glorious grease of all well-oiled party machines, and I will save multiple blessings for your numerous offspring. I will also continue to cook for you, as long as you do the washing up.
Monday
Tracyfab and Peter, you were the antidote to Icky Hotel Syndrome, and made us all human again. Paladin is definitely gay, sorry, Peter. Is it always this dangerous? We love you.
To everyone concerned - we are running anywhere from 2 hours to 6 days late, as usual.
Ashland, thank you for the slightly scary motel and the fantastic heart attack breakfast. Also tea. Also snow on ridges. In October.
Saturday
The way to go from the tea house to the saluthaus is - turn left out of driveway. Go 9 miles east on route 113. turn left onto I-5. Drive 700 miles north. (Do not stop for the boatgirls.) Turn right. Go in a spiral towards the saluthaus until you are there, and park.
Tracy and Peter, you rock my socks off, as always. I get to your house, and I simultaneously want to talk, drink tea, juggle, and fall asleep on the couch. This is a good thing. One of these days we are actually going to arrive, and NOT leave again for weeks, like we always threaten to. We will, however, arrive with boxes of food. This is also a good thing.
Crowd in General - sorry for running away when we first arrived, we had Crowdy Shyness, which we soon overcame.
Oak trees in the park - thanks for the acorns. I don't know what's happening with you, but I'm guessing it's going to be a hard winter. We appreciate your letting us know.
Horse chestnuts - thank you also, for being cool in pockets and not sneaky being thrown at people. Mostly. I was never there.
Walter and QXZ, Great to see you again, Valtah. Yes, you can interview us anytime, and we both promise that we won't be drunk the entire time. Only part. Also, we might get a visit from the saluthaus contingent in February, so if you need sunshine, that might be the time to do it. QXZ, you are a peach. It's wierd and cool to "meet" someone I feel like I've known for at least five years. We have a place saved for you in the Everything, Kansas Mansion of Doom. Or a yurt, if you are an antisocial type, take your pick.
panamaus, You're my wife now, Dave. Although that was quite the smooch you laid on me when we first arrived - are you sure there's something you're not telling me? We love you. You is good people, and we will keep you.
Sunday
ideath, cooking in your kitchen with you is truly great, and I didn't break any knives and/or cast iron pans - and even when my feet stick to the floor. I haven't faced my stripey socks yet. Also I learned some new recipes, and that's the biggest Pot O' Tofu I've ever seen.
I learned some useful things from you -
Making food on Sunday afternoon for lunch for hungry, vaguely hung over noders was a brilliant idea. However, making food on Sunday afternoon that was meant for about six people, and trying to stretch it to feed 18 was not entirely a success. Next time, plan ahead that We Will Be Providing Lunch for all and sundry two hours before the pie party, and cook for a mob. Also, remind me to feed myself, otherwise beer go to head and grundoon get stupid. I highly recommend sign up sheets.
Cronfrom, why has it taken us five frickin' years to play some music together? We, jointly, suck. When you come down in February, we will invite all the local plunkers to horrify you with our caconophy.
Ouroboros, despite your being descended from the Borgias, this time you FAILED to poison me, although you might have succeeded without the incredibly effective chaperonage of a nine-year-old. She was going to keep me in line, Vesper Martinis notwithstanding. Also, Gin Fizzes rock, more please.
Mitzi, huge apologies, I did not read your letter aloud. I have forwarded on to the people you mentioned, and will be happy to give it to anyone else. It was a HUGE party...we arrived late on Saturday, and had to leave early because Tess was scared of the loud drunk guys on the porch...and there was no great time for reading aloud. The dog ate my homework. Forgive. I will do better next time.
Musicians of the Creaking Planks, blessings on your firstborn(s). It was great to jam with all of you, and John, you are the first person ever to have guitar envy over my guitar. Send me your email address, and I'll tell you the story and where you can get one. Rowan, I wish I knew an accordion player locally, and next time I come to Vancouver I will come and bug you to play more music with me. The whole concept of seven instruments that were never meant to be played together is most excellent. Some afro-celtic-klezmer-zappa fusion, anyone?
Pornwatchers on the living room futon - You suck. Seriously. Next time, please think about your unintended, unwilling, uninterested, and/or underage audience. I'm all for sex positive, and all that, but I also REALLY don't want to explain a blue video to a nine year old. At least have enough sense to go into another room, where I, for one, do not have to walk past your screen to get to another room. Really, people, show some sense. If any of you ever have kids, I will seriously send them creepy shit anonymously in the mail.
You really pissed me off. Huge, groveling apologies will only be accepted if accompanied by boxes of chocolate, roses, and booze.
Notes to self -
Noders listen more carefully to announcements made when I am wielding a large, sharp kitchen knife. They also listen more carefully when I am making an announcement about food or booze. Remember this for future gatherings.
Also, people seem more willing to volunteer for dish-doing when I am knife-wielding. I have no idea why this is so, but those of you who washed up, many times, you are the glorious grease of all well-oiled party machines, and I will save multiple blessings for your numerous offspring. I will also continue to cook for you, as long as you do the washing up.
Monday
Tracyfab and Peter, you were the antidote to Icky Hotel Syndrome, and made us all human again. Paladin is definitely gay, sorry, Peter. Is it always this dangerous? We love you.
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