Monday, August 29, 2011
Second opinion
The lovely oncology people at University of Chicago Medical Center are of precisely the same opinion as those at NWM about the chemo cocktail. I am very relieved, and will set up to begin upon return from imminent vacation.
Friday, August 26, 2011
Nutritionist
General guidelines from the nutritionist at the oncology center. Interesting thought about fruit. Seems sound advice even for the healthy.
1. Limit red meat -- including pork. (Huh? -- Yes, according to the American Cancer Society, pork is red meat.)
2. Tip the balance of what you eat towards the plant-based. More fruit. More veg.
3. Beware food contamination, since chemo supresses the immune system. Wash fruits that have a rind, since when you cut them, you drag the knife right through. Limit sushi (waaaah!).
4. Beware multivitamins that contain more than 100% of the daily recommended amount of anything. Superdoses of anything, even herbs, can interfere with chemo.
5. Lots of advice on dealing with nausea, which I see no reason to detail.
1. Limit red meat -- including pork. (Huh? -- Yes, according to the American Cancer Society, pork is red meat.)
2. Tip the balance of what you eat towards the plant-based. More fruit. More veg.
3. Beware food contamination, since chemo supresses the immune system. Wash fruits that have a rind, since when you cut them, you drag the knife right through. Limit sushi (waaaah!).
4. Beware multivitamins that contain more than 100% of the daily recommended amount of anything. Superdoses of anything, even herbs, can interfere with chemo.
5. Lots of advice on dealing with nausea, which I see no reason to detail.
Tuesday, August 23, 2011
Mammogram policy shake-up, 2009
Fascinating. I mean, the sort of "fascinating" that makes one sick to one's stomach.
Nov. 16, 2009 -- U.S. Preventive Services Task Force issues revised breast cancer screening guidelines.
Dept of Health and Human Services says women younger than age 50 do not need routine mammography screening and that women ages 50 to 74 should get a mammogram every two years.
Sticking with existing guidelines
Leading organizations say they plan to continue following existing breast cancer screening recommendations rather than implementing the U.S. Preventive Services Task Force's new guidelines.
American College of Radiology: Annual screening mammogram for women 40 and older.
American Cancer Society: Annual screening mammogram and clinical breast exam for women 40 and older.
American College of Obstetricians and Gynecologists: Annual or biennial screening mammogram for women 40 to 49. Annual screening mammogram for women 50 and older.
National Cancer Institute: Annual or biennial screening mammogram for women 40 and older.
The American Medical Association did not issue a statement on the guidelines, but it has existing policy calling for annual mammograms starting at age 40."
Nov. 16, 2009 -- U.S. Preventive Services Task Force issues revised breast cancer screening guidelines.
Dept of Health and Human Services says women younger than age 50 do not need routine mammography screening and that women ages 50 to 74 should get a mammogram every two years.
Sticking with existing guidelines
Leading organizations say they plan to continue following existing breast cancer screening recommendations rather than implementing the U.S. Preventive Services Task Force's new guidelines.
American College of Radiology: Annual screening mammogram for women 40 and older.
American Cancer Society: Annual screening mammogram and clinical breast exam for women 40 and older.
American College of Obstetricians and Gynecologists: Annual or biennial screening mammogram for women 40 to 49. Annual screening mammogram for women 50 and older.
National Cancer Institute: Annual or biennial screening mammogram for women 40 and older.
The American Medical Association did not issue a statement on the guidelines, but it has existing policy calling for annual mammograms starting at age 40."
Mammograms
Tomorrow I see my GP for the first time since diagnosis. Since her recommendation to skip the annual mammogram for the past couple of years is what allowed the cancer to blossom, I believe I'll ask her to show me, in writing, the AMA policy to which she referred at the time -- that annual mammograms are now only recommended for women past 50 (which I am not).
Regardless of her answer, I need a new GP.
Regardless of her answer, I need a new GP.
Monday, August 22, 2011
Love the one you're with
Kiss your baby today. If you don't have a baby, kiss someone who makes you happy. We are only on this earth for a short while. Don't be stingy.
"And in the end, the love you take is equal to the love you make."
"And in the end, the love you take is equal to the love you make."
Friday, August 19, 2011
Clinical trials
Ahem. Back to the matter at hand.
A friend has suggested that since I have the most common form of a most common ailment (meaning that the common drug regimens have been well-tested and used), and that my chances of survival are so high, that I not take a risk by participating in a clinical trial for chemo.
I must admit that I had been thinking on the opposite tack: that if I could find a trial that used common drugs, but perhaps in smaller doses, then perhaps I would sign up. Arguably (said the layman), this would mean less toxins for my body, but also that fewer cancer cells would die. Would I rather die of the damage caused by toxins, or from a cancer recurrence? *sigh*
Or, as he also pointed out.... there's always the speeding bus that would make the question moot.
My only other thought on the subject is that a dear friend passed away due to a clinical trial for hormone replacement drugs in which she was participating.
More thought needed on this subject.
A friend has suggested that since I have the most common form of a most common ailment (meaning that the common drug regimens have been well-tested and used), and that my chances of survival are so high, that I not take a risk by participating in a clinical trial for chemo.
I must admit that I had been thinking on the opposite tack: that if I could find a trial that used common drugs, but perhaps in smaller doses, then perhaps I would sign up. Arguably (said the layman), this would mean less toxins for my body, but also that fewer cancer cells would die. Would I rather die of the damage caused by toxins, or from a cancer recurrence? *sigh*
Or, as he also pointed out.... there's always the speeding bus that would make the question moot.
My only other thought on the subject is that a dear friend passed away due to a clinical trial for hormone replacement drugs in which she was participating.
More thought needed on this subject.
Thursday, August 18, 2011
Tuesday, August 16, 2011
Sunday, August 14, 2011
Bleach
How many of you can say that your mother bleached your hair? None? Thought so. Tomorrow she goes for the pink.
Saturday, August 13, 2011
The back
My lovely neighbor Leigh shaved the back of my head, since I chickened out halfway through. Have acquired two hues of Manic Panic and some super-strength Aquanet. Now the fun begins!
Friday, August 12, 2011
Mohawk
Yes, I've chosen the fun route to hair loss. Curious people can email me for a picture. There will not be one here.
Thursday, August 11, 2011
Chemo drugs, clinical trials, and free housecleaning
Recommended regimen = ACT. adriamycin, cytoxan, taxol. More here. It's one of the more common ones.
Have my work cut out for me, looking for applicable clinical trials for chemo. But there is this site, which is a gigantic help. I found 41 that apply.
And I learned of Cleaning For A Reason, which can provide 4 free housecleanings for ladies with cancer - one per month. Yay.
Have my work cut out for me, looking for applicable clinical trials for chemo. But there is this site, which is a gigantic help. I found 41 that apply.
And I learned of Cleaning For A Reason, which can provide 4 free housecleanings for ladies with cancer - one per month. Yay.
Tuesday, August 9, 2011
Chemo consult, hair situation, A Word Of Advice
Chemo dude had nothing new to say, and felt okay with minimizing the effects of chemo, to boot."I've had patients compete in triathlons during chemo." And screw you, you smug defensive bastard. The drugs he recommends are A C T -- details tomorrow since I can't remember right now. I will get a 2nd and perhaps 3rd opinion on the cocktail.
Hair situation - I think I'm going to wait until it starts to fall out (because who knows? says my denial engine, it may not fall out at all!) ... and get a mohawk. It will avoid the soul-crushing clumps-on-the-pillow situation and also give me the satisfaction, finally, of going full-on punk. I can't wait.
Advice: My brain goes into gridlock when I talk to doctors, mostly. The fear overwhelms me, the internal chatter starts up, I get home and have no idea what they said. My cheeky self tried an experiment --- the tape recorder -- and lo -- the surgeon, radiation dude and chemo dude all agreed to be recorded. This should prevent the hysteria I experienced last week, when I forgot what the surgeon had apparently already explained once. A hearty HUZZAH! to MDs who are willing to be recorded. And if yours won't, good people, find yourself new doctors.
Hair situation - I think I'm going to wait until it starts to fall out (because who knows? says my denial engine, it may not fall out at all!) ... and get a mohawk. It will avoid the soul-crushing clumps-on-the-pillow situation and also give me the satisfaction, finally, of going full-on punk. I can't wait.
Advice: My brain goes into gridlock when I talk to doctors, mostly. The fear overwhelms me, the internal chatter starts up, I get home and have no idea what they said. My cheeky self tried an experiment --- the tape recorder -- and lo -- the surgeon, radiation dude and chemo dude all agreed to be recorded. This should prevent the hysteria I experienced last week, when I forgot what the surgeon had apparently already explained once. A hearty HUZZAH! to MDs who are willing to be recorded. And if yours won't, good people, find yourself new doctors.
Monday, August 8, 2011
Swelling update
Hospital says that the swelling is not lymphedema, since that usually happens in the arm. And the numbness, etc. I have is mostly near the other bits that were affected by the surgery .. but not my arm. It can take a year to go away, and I apparently probably worsened it by picking up the toddler with both arms, but I'm relieved.
Saturday, August 6, 2011
Swelling
Well, let's hope this is the beginning and the end of edema, and a side effect of surgery. Amazingly, fluid buildup hurts far more than surgical incisions. Go know.
Friday, August 5, 2011
Help with dinner
My lovely friend Laura set up a gift account for me and the child with a local service that delivers home-cooked meals with very little notice. Anyone interested in footing the bill for a meal can call up and do so (they don't offer the service online, apparently).
Using the service is not only a brilliant suggestion for me, but it also allows people who would like to help to do so .... without needing to deal with my crankiness in person. Kudos to her for making The Thoughtful Gesture Of The Day. I image I'll get know these folks pretty well over the next four months.
BONUS PRIZE -- They offer gluten-free, dairy-free, and veggie options. And not even simultaneously. Whoo-hoo!
The Perfect Dinner / 708.660.8731
Using the service is not only a brilliant suggestion for me, but it also allows people who would like to help to do so .... without needing to deal with my crankiness in person. Kudos to her for making The Thoughtful Gesture Of The Day. I image I'll get know these folks pretty well over the next four months.
BONUS PRIZE -- They offer gluten-free, dairy-free, and veggie options. And not even simultaneously. Whoo-hoo!
The Perfect Dinner / 708.660.8731
Thursday, August 4, 2011
Radiation consult / Baby thought
So, what did we learn from radiation dude? Nothing new, really. Changes caused by radiation to both the texture and tissue of the overall breast may be permanent. I hadn't thought about it, and I don't particularly want to think about it now. One sort of cool thing: In order to make sure that they pinpoint the therapy, they make a big 3-d foam mold of your bod from the waist up, and you lie in it at each visit. Smart.
Baby thought: The baby needs a solid solution that takes into account mama's sick days and nana's sick days. Especially during the holidays, I will not be able to deal with frequent one-off emergency planning. She likes the daycare, so perhaps she can put up with it 5 days/wk. It's quite near the hospital where I'll get both C and R.
Went 'public' with this thing on facebook yesterday, and my lovelies both near and far have been incredible. Love to you all. I am grateful.
Baby thought: The baby needs a solid solution that takes into account mama's sick days and nana's sick days. Especially during the holidays, I will not be able to deal with frequent one-off emergency planning. She likes the daycare, so perhaps she can put up with it 5 days/wk. It's quite near the hospital where I'll get both C and R.
Went 'public' with this thing on facebook yesterday, and my lovelies both near and far have been incredible. Love to you all. I am grateful.
Wednesday, August 3, 2011
The biggest loser
... is the toddler, whose mama loses patience with her even when she is not nauseous and exhausted. She won't understand what is going on (right now we talk about "mommy's owie"), so I need to make sure there's something in place that will relieve her of my presence during the worst of this.
Metastasis
What a horrible word. I am just now absorbing the fact that since the moment the DCIS became invasive -- and who knows when that was? -- there were probably cancer cells floating throughout my body. I feel so... riddled with it. I feel as if I should be able to stand still and be very quiet and be able to tell - be able to feel where else it is. Is it in my brain, looking for a dusty corner to hide in? Is it in my heart? Or my little toe? If cancer had any pity, it would cause a great deal of localized pain, so one would know when and where it was present. But I suppose we know that it has none.
Today's wisdom from the surgeon is as follows.
The general schedule of the next year for me will be:
Sep - Dec 8 treatments of chemo, given every 2 weeks (hair-free portion of this time: Nov through New Years, during which time I shall wear hand-knit hats made by self, not a wig)
Jan rest
Feb-March 8 weeks of radiation
Next 3 years Mammogram every 6 months to detect possible recurrence
Next 5 years Hormone therapy, probably tamoxifen for a year, then perhaps another drug. Tamoxifen prevents the estrogen in your body from attaching to cancer cells, preventing new growth.
Possibility of surgery to remove more lymph nodes:
Slim but possible. More news of that next week after she consults with her team of oncologists, radiologists, surgeons, etc. The complication here is that the metastasis was in a NON-sentinel node, which is unusual. My assumption is that more surgery will increase the likelihood and severity of lymphedema in my left arm, so I'll skip it, thank you very bloody much.
On the additional cancer found in the margins:
It was non-invasive (DCIS), which is the precursor to invasive. Such findings are common -- the two types co-exist. Reason not to worry: Radiation takes care of this and other presumably present but undetected diseased tissue. "If we could remove every last cancer cell with surgery, there would be no need for radiation."
Also, it was found only in one margin, not in the other three. She is not concerned about it.
Stage two:
Because of the lymph node involvement and the size of the thing (it wound up 2.6 cm as opposed to the 2.0 that showed on the mammogram), it is now stage 2, which means a lower survival rate. Does the difference between 2.0 and 2.6 mean it was fast-growing? No - it's the difference between imaging and pathology.
Menopause:
Considering my age, the chemo will bring on menopause. 'Nuff said.
Green light at the end of this misery:
Nope. Full-body scans are seen as more anxiety-provoking than helpful.
Tomorrow, a visit to the radiation oncologist.
Today's wisdom from the surgeon is as follows.
The general schedule of the next year for me will be:
Sep - Dec 8 treatments of chemo, given every 2 weeks (hair-free portion of this time: Nov through New Years, during which time I shall wear hand-knit hats made by self, not a wig)
Jan rest
Feb-March 8 weeks of radiation
Next 3 years Mammogram every 6 months to detect possible recurrence
Next 5 years Hormone therapy, probably tamoxifen for a year, then perhaps another drug. Tamoxifen prevents the estrogen in your body from attaching to cancer cells, preventing new growth.
Possibility of surgery to remove more lymph nodes:
Slim but possible. More news of that next week after she consults with her team of oncologists, radiologists, surgeons, etc. The complication here is that the metastasis was in a NON-sentinel node, which is unusual. My assumption is that more surgery will increase the likelihood and severity of lymphedema in my left arm, so I'll skip it, thank you very bloody much.
On the additional cancer found in the margins:
It was non-invasive (DCIS), which is the precursor to invasive. Such findings are common -- the two types co-exist. Reason not to worry: Radiation takes care of this and other presumably present but undetected diseased tissue. "If we could remove every last cancer cell with surgery, there would be no need for radiation."
Also, it was found only in one margin, not in the other three. She is not concerned about it.
Stage two:
Because of the lymph node involvement and the size of the thing (it wound up 2.6 cm as opposed to the 2.0 that showed on the mammogram), it is now stage 2, which means a lower survival rate. Does the difference between 2.0 and 2.6 mean it was fast-growing? No - it's the difference between imaging and pathology.
Menopause:
Considering my age, the chemo will bring on menopause. 'Nuff said.
Green light at the end of this misery:
Nope. Full-body scans are seen as more anxiety-provoking than helpful.
Tomorrow, a visit to the radiation oncologist.
Tuesday, August 2, 2011
Surgeon
OK, I've now spoken to the surgeon. Seems things are more complex than I'd realized regarding how cancer spreads.
Having cancer in one node is not as bad as having it in a lot of them. But it also means there is a higher chance that it has spread.
"Higher than what?" you ask. Higher than the 1 in 4 chance that any invasive cancer will have cells break off it and go floating around your body looking for a new place to try and kill you regardless of lymph node involvement.
I meet with her tomorrow, but she says it's "interesting" that the cancer was not in the sentinel node, where it usually is found, if anywhere. She may go back in and take out more nodes, but is not sure yet.
But chemo sounds like a definite to me now. Hoorah.
I'm NOT leaving the baby.
Having cancer in one node is not as bad as having it in a lot of them. But it also means there is a higher chance that it has spread.
"Higher than what?" you ask. Higher than the 1 in 4 chance that any invasive cancer will have cells break off it and go floating around your body looking for a new place to try and kill you regardless of lymph node involvement.
I meet with her tomorrow, but she says it's "interesting" that the cancer was not in the sentinel node, where it usually is found, if anywhere. She may go back in and take out more nodes, but is not sure yet.
But chemo sounds like a definite to me now. Hoorah.
I'm NOT leaving the baby.
Surgery results
I got the results of the surgery from a secretary who was unable to answer any questions.
They removed 4 lymph nodes. One is cancerous.
The margins around the tumor, which turned out to be 2.6cm, are mostly cancer-free but there is evidence of a different non-invasive cancer there.
Chemo is highly likely, and will be done before the radiation.
Within the week, I will meet with the surgeon, the radiation doc and the chemo doc and have more information about the prognosis and treatment.
I must say, I find it appalling that not only did the surgeon not call me though a call was promised (I finally broke down and called her assistant), but to be given such results by a person who lacks the ability to answer the simplest question, namely HAS THE FUCKING THING SPREAD TO THE REST OF MY BODY? is unforgivable. Absolutely unforgivable. And we're not dealing with Yipahoopee State Medical Center, either. This is a well-respected hospital. Though not respected by me anymore.
We're not talking about a broken toe, here. I am speechless at the heartless and clinical way these results were handled.
They removed 4 lymph nodes. One is cancerous.
The margins around the tumor, which turned out to be 2.6cm, are mostly cancer-free but there is evidence of a different non-invasive cancer there.
Chemo is highly likely, and will be done before the radiation.
Within the week, I will meet with the surgeon, the radiation doc and the chemo doc and have more information about the prognosis and treatment.
I must say, I find it appalling that not only did the surgeon not call me though a call was promised (I finally broke down and called her assistant), but to be given such results by a person who lacks the ability to answer the simplest question, namely HAS THE FUCKING THING SPREAD TO THE REST OF MY BODY? is unforgivable. Absolutely unforgivable. And we're not dealing with Yipahoopee State Medical Center, either. This is a well-respected hospital. Though not respected by me anymore.
We're not talking about a broken toe, here. I am speechless at the heartless and clinical way these results were handled.
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