Still Thriving...
Wednesday, October 31, 2007
Next Step...
Today I made my SIM appointment. I'm lucky I called when I did because I got the last slot available for a while. As it is I should've done this a week or two ago. Regardless, I was told that the timing is fine and many people have been known to wait to begin treatment a lot longer than me.
The appointment is November 15th @ 11:30 and will take a good portion of the day. I'll be getting the freckle tats and all the markings and perhaps they do a dry run? I haven't gotten all the vernacular down yet. I'm just glad this is in the works already. On the 15th I'll be able to make the 2nd appointment necessary before I can begin the actual radiation. Can't make it any sooner so the date is TBD. I still need to understand what will transpire at that appt. Maybe that's the dry run day. I know they'll be using films taken on the 15th so I'm guessing they do the final calibration and note the settings of the machinery.
I'm off to see T+A and tonight I'll start the first dose of T. If I turn into a mad woman, we won't know if it's the drug or the Halloween moon or both. Speaking of Halloween, this is the first one ever that I did not have one piece of candy. Living sugar free wasn't too easy in the beginning but the cravings are definitely dissipating.
Thank you all for your words of encouragement. Your emails mean a lot to me. Feel free to post them on here too if there's anything you want to share with others.
Trick or treat!
Liz
Tuesday, October 30, 2007
Time In A Bottle
Well, here it is. The latest edition to my nighttime regimen. Tamoxifen 20mg. Take once a day with or without food. For five years.
This should be a clue as to my final decision to use or not use chemo as part of my treatment plan. If you remember, one would only start this drug if s/he did not do or else finished chemo.
Today I called Dr. Malamud and told him that I am refusing the chemo. This was not met with any good or bad reaction. I think he was ready to hear it. We just discussed next steps. That is, he will fill my Rx for Tamoxifen and I should see him within 3-4 weeks of beginning radiation. As for the latter, mea culpa, I should've have made an appt for my SIM (simulation) already but with all that was on my mind, I simply forgot. I suppose at one point I thought I may do chemo and would have a few months before the appt was necessary. Regardless, I left a message with the rad's (that's cancer talk for radiologist) office requesting a date and should hear back tomorrow.
Tamoxifen (ta-MOX-i-fen)
Common uses: This medicine is an anti-estrogen used to treat or prevent breast cancer. It may also be used to treat other conditions as determined by your doctor.
BEFORE USING THIS MEDICINE: WARNING: Tamoxifen rarely may cause serious (possibly fatal) side effects. These include cancer of the uterus (endometrial cancer and uterine sarcoma), as well as strokes and blood clots in the lung (pulmonary emboli). Tell your dr. immediately if you develop: vaginal bleeding, irregular or abnormal menstrual periods, groin pain or pressure, chest pain, trouble breathing, one-side weakness. If you are taking this medicine for prevention of breast cancer .... discuss w/ your dr. the risks vs the benefits... However, if you are taking T for treatment of breast cancer, the proven benefits clearly are greater than the risk of side effects. Consult.......... blah blah........blah blah........
POSSIBLE SIDE EFFECTS: Side effects that may go away during treatment include hot flashes, leg cramps, UTIs ....women stuff, women stuff, women stuff.... If they continue.... consult....zzzzzzzzzzzzzz...sharpen steak knives...zzzzzzzz...
Well, let's hope I fall into the positive stats of ER+ tumors/invasive cancer from being prevented.
I spoke to a woman today who has another six months left on this drug. She said other than weight gain and slightly thinning hair --remedied with more cardio and extensions respectively-- she didn't experience too many bad side effects although the first night on the drug she had a pounding headache that wouldn't go away and she went somewhat hysterical, crying, sobbing, and felt out of control.
When I questioned Dr. Malamud if this is normal, he replied, I HOPE you have that feeling for only one day!
When I asked about the likelihood of uterine cancer, he said, 1:10,000. (These are odds I can live with).
What if I get bad headaches? Take Tylenol, avoid aspirin.
So, I'm entering what will kind of feel like menopause but won't actually be menopause. (Of course some side effects are worse with some than others.) The "antiestrogen" intercepts the estrogen from the estrogen receptor on the surface of cancer cells, preventing estrogen from entering the cell and stimulating growth. (Growth leads to tumor).
As you know, every drug has its side effects. We make fun of those Viagra and myriad drug commercials constantly. Although after reading those of Tamoxifen I haven't been thrilled with the idea of taking it, I know I have to do something conventional. With the use of this drug is how I come to only a 13% chance of recurrence within ten years. Those are the odds I was weighing against doing the chemo or not.
I thought I'd be somewhat relieved after I spoke with the dr. I was as far as finally voicing my decision, but I felt a little wilted and got a little teary eyed walking to the pharmacy to pick up my new hormone therapy. Who the hell wants to take this stuff? No one. But after tearing through the stack of books that arrived from Amazon today, I know this is what's available right now and it's going to fight the cancer. My situation can certainly be far, far worse than it is. Nonetheless, I am more drained from this past week than I have been since hearing about my diagnosis.
For now, I know everything will be all right but my spirit's a little busted up. I'm sure this will turn itself around in a just a couple of days (if the drug doesn't make me insane). As a matter of fact I'm going to see "A Chorus Line" tomorrow night. You remember the song, "Tits and A-aaasss, yes, tits and..."
Can I ever escape this topic?!
Friday, October 26, 2007
Is That Your Final Answer?
Oh, where's Claire Voyant and the Amazing Kreskin when you need them? How I wish I could get an ironclad guarantee that my decision to do or not do chemo will be the right one.
For those hoping to learn how I will proceed next, unfortunately you may not be happy with this entry.
I have been doing my due diligence and calling those whom I think are all the right people, asking what I think are the right questions, doing the right research.
I am not opposed to chemotherapy. I am opposed to doing it unnecessarily. And therein lies the rub. There are no definite answers a) with any chemo b) without the chemo c) with someone with my rating on the Oncotype scale refusing chemo.
Reminder: According to the Oncotype Dx test, if one falls into the low or the high end of risk, it's found that patients will not/will respond and benefit from chemo respecitively. This discovery is great b/c for many years, people were getting chemo when it was unwarranted; now they are ruled out. What's still being studied, however, is what to do for intermediate scorers (in my case I fall within the low end of intermediate risk or 13% risk of recurrence w/in ten years).
The greatest cons --aside from the obvious ones we all know about--of doing chemo:
Reminder: According to the Oncotype Dx test, if one falls into the low or the high end of risk, it's found that patients will not/will respond and benefit from chemo respecitively. This discovery is great b/c for many years, people were getting chemo when it was unwarranted; now they are ruled out. What's still being studied, however, is what to do for intermediate scorers (in my case I fall within the low end of intermediate risk or 13% risk of recurrence w/in ten years).
The greatest cons --aside from the obvious ones we all know about--of doing chemo:
Option 1, lowers odds to 9%:
CMF, or the "lighter" formula, brings with it a 50% chance that I will go into menopause.
CMF, or the "lighter" formula, brings with it a 50% chance that I will go into menopause.
Option 2, lowers odds to 7%:
The "stronger" formula containing Taxotere + Cytoxan (for which studies have only been done FIVE years, not the full ten): Osteoporosis (already a potential side effect of the Tamoxphen that I will be on for five years once radiation begins); Chemobrain--patients report forgetfulness, trouble focusing and even mental fatigue as part of this phenomenon (I think may not be long term); nerve damage or neuropathy which can cause loss of sensation, tingling, numbness or painful sensations. Nerve damage is most often associated with the taxanes. May fix itself after a year.
The "stronger" formula containing Taxotere + Cytoxan (for which studies have only been done FIVE years, not the full ten): Osteoporosis (already a potential side effect of the Tamoxphen that I will be on for five years once radiation begins); Chemobrain--patients report forgetfulness, trouble focusing and even mental fatigue as part of this phenomenon (I think may not be long term); nerve damage or neuropathy which can cause loss of sensation, tingling, numbness or painful sensations. Nerve damage is most often associated with the taxanes. May fix itself after a year.
Regardless of whether or not I do chemo, I would of course be regularly tested for breast cancer with the help of bi-annual mammos. For cancer of the body, PET scans would be given. According to Dr. Malamud, they're good but not perfect tests, but it is what is available right now. Other than that, there are regular physicals and blood work done.
For the record, when I conveyed the possibility of my refusing chemo and the reasons why to Dr. Melamud this past Friday he said, "Liz, there is no right or wrong answer." It basically is about my being satisfied with a 13% chance of recurrence. He understands that if he'd said, Liz your risk is X% high, you really need to do this, then I would.
I know many of your have expressed that you'd do anything you could not to get cancer a second time. If I thought that this was a surefire way not to, I would be a lot more open to it. Trust me, when I have a bad headache or PMS, I take an Aleve. Because I know the pain will go away. When my body doesn't feel right, I go to the appropriate dr. Going for my baseline mammo at 40 is what got me here in the first place (I'd been asking my gyno for at least five years if I should be going yet). I believe in medicine and the medical technology that's helped me thus far. I also believe in doing what I can to care for my well being without it.
My mind is swinging like a pendulum. I say, I want to do the right thing. But what is it? God forbid I do have a recurrence in a few years, I realize I will have to live w/the choice I've made today. I think that if there was no option at all (just the rad+Tamox) and I was given a 13% of recurrence, I could really live with that number. But it's also highly probable that just a few years from now, there will be a lot more information available about various treatments. Even the study for the chemo being recommended to people who fall into my category would be that much more advanced in its findings.
I've changed my mind several times, so don't be convinced that this is my final answer. But for the past couple of days, what you've read is what I see in my crystal ball.
Next installment will be this Monday, Tues the latest. I will have either met with Dr. Malamud in person or given him my answer on the phone.
Also, for those concerned that I am waiting too long, I am not. I am definitely within the window of time that one may take after having his or her surgery.
I can't ask that you understand exactly from where I am coming. I can only ask that you don't shoot me down and just support me in my decision. And if you don't, I understand, that is your decision.
Thanks for reading....
E.
I know many of your have expressed that you'd do anything you could not to get cancer a second time. If I thought that this was a surefire way not to, I would be a lot more open to it. Trust me, when I have a bad headache or PMS, I take an Aleve. Because I know the pain will go away. When my body doesn't feel right, I go to the appropriate dr. Going for my baseline mammo at 40 is what got me here in the first place (I'd been asking my gyno for at least five years if I should be going yet). I believe in medicine and the medical technology that's helped me thus far. I also believe in doing what I can to care for my well being without it.
My mind is swinging like a pendulum. I say, I want to do the right thing. But what is it? God forbid I do have a recurrence in a few years, I realize I will have to live w/the choice I've made today. I think that if there was no option at all (just the rad+Tamox) and I was given a 13% of recurrence, I could really live with that number. But it's also highly probable that just a few years from now, there will be a lot more information available about various treatments. Even the study for the chemo being recommended to people who fall into my category would be that much more advanced in its findings.
I've changed my mind several times, so don't be convinced that this is my final answer. But for the past couple of days, what you've read is what I see in my crystal ball.
Next installment will be this Monday, Tues the latest. I will have either met with Dr. Malamud in person or given him my answer on the phone.
Also, for those concerned that I am waiting too long, I am not. I am definitely within the window of time that one may take after having his or her surgery.
I can't ask that you understand exactly from where I am coming. I can only ask that you don't shoot me down and just support me in my decision. And if you don't, I understand, that is your decision.
"We have to believe in free will. We've got no choice."
Isaac Bashevis Singer
Thanks for reading....
E.
Tuesday, October 23, 2007
Venus - Mars = Venus
Last night I found myself watching a fairly cheesy movie on Lifetime. Ricki Lake portrayed, Linda, a single woman who had a mastectomy and had to go back out into the dating world. She was feeling totally insecure and thought she'd never find a man who loved her and that the only way should would feel sexy and um, whole, again was if she had a man.
For the record, Lifetime movies typically make me gag but for obvious reasons I kept this one on. I must give credit where it's due. They covered the topic fairly well and the dialog was pretty realistic. One gorgeous guy after another tripping over Linda wasn't all that realistic, but I made allowances. I digress.
Recently I have not only joined the ranks of breast cancer survivors out there (man, I'm really tired of hearing that term thrown around. October is a long month)... but I am surviving BC AND a breakup! I was bitter at first although thankfully I never took on the "why me" attitude. I was just, well, bitter. And a bit sad. It was something that I knew should've happened 2-3 weeks prior to my getting the call. But aside from getting out there and "looking again," I didn't do much else it b/c I thought life would be better if I had a man in my life albeit not the right man. And before any of you men reading this think that this is point where I start male bashing, it's not at all. This man was a gentleman who offered me a lot of support and whose conversation and humor I really enjoyed, but in my heart, I knew it wasn't going to work. That being said, it really wasn't going to work b/c he "ran into an old friend." Whether or not it's true, and I'll never know, it still hurt because a) I hate abrupt good-byes, b) my ego was bruised and c) it wasn't done on MY terms.
So there I lay manless and tumorless and I still have this treatment road ahead of me for which the decision process is not easy. Sigh. Heavy sigh ... oh, woe is me. Cancer would be soooo much better if I had a man telling me that I'm beautiful. Wouldn't it?
A few weeks ago I went to my elementary school's 80th anniversary. I saw my 3rd, 5th and 6th grade teachers all of whom I remembered and they remembered me. It was a great day. It was as if time stood still. The only difference was I was bigger and all the rooms and desks seemed smaller. Upon seeing my 6th grade teacher, Barbara H., we hugged and she made me cry as a result of her excitement in seeing me; I told her all the things that I'll never forget she taught me. (She jokingly asked if I'd speak at her funeral). Just yesterday--prior to turning on the cheesy Lifetime movie-- I got a card from Barbara in which she wrote, "...You still have the grace and beauty that you had in sixth grade...". This immediately brought me to tears.
It occured to me that with or without Mars, I really am OK. My sixth grade teacher told me so!
As you can imagine, Linda gets her man at the end of the movie, but not until she's suffered a lot of growing pains.
Thanks all for being there while I go through mine.
;>)
Friday, October 19, 2007
Got Milk?
Food for thought:
Some of my blood work came back and it appears that my Vitamin D levels are extremely low. There has been research done connecting low levels of D with various cancers including BC, neurological diseases (e.g. MS), Diabetes1, bone loss and other conditions.
The normal range is from 10-60.
But less than 30 is considered insuffienct.
Less than 20 is deficient.
Dr. Dana said she's only seen two patients in her medical history with levels that low.
It would make some sense seeing as I do my best to avoid the sun b/c of my skin's sensitivity to it.
Some of my blood work came back and it appears that my Vitamin D levels are extremely low. There has been research done connecting low levels of D with various cancers including BC, neurological diseases (e.g. MS), Diabetes1, bone loss and other conditions.
The normal range is from 10-60.
But less than 30 is considered insuffienct.
Less than 20 is deficient.
Mine was 8.4.
Dr. Dana said she's only seen two patients in her medical history with levels that low.
It would make some sense seeing as I do my best to avoid the sun b/c of my skin's sensitivity to it.
So I'm off to the tanning parlor and with my new tats, I should be looking fiiiine.
Kidding.
If you don't get a lot of sun though, you may want to consider getting your levels checked and eating a lot of tuna, salmon, sardines, mackerel, dairy and egg yolks--all of course depending on what you personal dietary needs/restrictions are. That being said, I do eat many of these foods but again, I avoid the sun. So I'm now taking extra supplements.
Kidding.
If you don't get a lot of sun though, you may want to consider getting your levels checked and eating a lot of tuna, salmon, sardines, mackerel, dairy and egg yolks--all of course depending on what you personal dietary needs/restrictions are. That being said, I do eat many of these foods but again, I avoid the sun. So I'm now taking extra supplements.
Moo.
Thursday, October 18, 2007
I'm Wiggin' Out...
Went to see the oncologist, Dr. Melamud, yesterday to review results of the Oncotype DX. http://www.genomichealth.com/oncotype/default.aspx?c1=google&source=searchkw=oncotype_dx I was so confident I did not have to be faced with the decision of whether or not to do chemo. Alas...my score fell into what’s considered to be the “intermediate risk” of recurrence area. This essentially means, based on testing about 15 genes from the sample of my tumor, and with the assumption that I will be taking Tamoxophen for five years, there's a 13% likelihood of cancer recurring anywhere (not just breast, anywhere) in my body over the next ten years.
Based on that information I may or may not choose to do chemo. Do I want to lower my odds 4-5%? I supposedly can by doing one of two chemo treatments for approximately four months. Or can I live with 13%?
This reflects if I were to take Tamoxophen but did NOT do chemo:
86 out of 100 women are alive without recurrence in 10 years
13 OUT OF 100 WOMEN DEVELOP RECURRENCE IN 10 years
1 out of 100 women die of other causes in 10 years
If I were to get chemo, I’d have two treatment options: 1st or 2nd generation, 2nd being the "stronger" of the two which means more side effects (e.g.hair loss) but lower odds of recurrence. (There is a 3rd option that is heavy duty and I ruled that out immediately.)
OPTION 1 (along with Tamoxophen);
CMF-Like (Cytoxan; Methaotreaxate; 5FU):
86 out of 100 women are alive and w/o recurrence in 10 years PLUS:
4 out of 100 women are alive and w/o recurrence b/c of therapy
9 OUT OF 100 WOMEN DEVELOP RECURRENCE IN TEN YEARS
1 out of 100 women die of other cause in 10 years
This would be administered by IV six times, once every three weeks. Side effects include minimal fatigue; it’s generally well tolerated; very little to no hair loss; 2-3 drugs are given to combat nausea/GI upset (Aloxi, Emend and Compazine if needed). One must watch blood count and only if necessary, Neulasta is given if white cell count is low.
OPTION 2 (along with Tamoxophen);
Second Generation Chemo Docetaxel (Taxotere) + Cytoxan:
86 out of 100 women are alive and w/o recurrence in 10 years PLUS:
6 out of 100 women are alive and w/o recurrence b/c of therapy
7 OUT OF 100 WOMEN DEVELOP REUCRRENCE IN TEN YEARS (7 vs the 9 from option 1)
1 out of 100 women die of other cause in 10 years
This would be administered by IV four times, once every three weeks. On the day following chemo, an injection of Neulasta is given to support the blood counts (vs only if necessary for option 1).
There is more fatigue, hair loss (i.e. balding), in some cases neuropathy (tingling of fingers); same 2-3 drugs are given to combat nausea/GI upset which is common as well as rawness of skin in mouth and a metallic taste.
I did not commit to doing either and advised the dr. I would get back to him. He not only understood, but encouraged me to think about it. I did ask him, If I were his daughter, what would he suggest? He said, Option 2. If I proceed, the chemo is done prior to the radiation + starting the Tamoxophen. (One can choose to start radiation half way through chemo but the cosmetic effects of the breast are worse than if one waits).
As for the radiation, met with Dr. Chada, but there’s nothing we can do now until I decide on the chemo. I know for sure though that I will do the radiation. Remember, radiation is to treat the area (e.g. le boob) locally vs the chemo which treats the entire body.
After lunch and slugging a glass of anti-oxidant-rich vino, I visited my friend Dana's office (she practices complementary + alternative med http://www.patientsmedical.com/Dana-Cohen-MD.html ) and she is setting me up on a program called First Line Therapy by Metagenics, a highly respected supplement company. There's a food plan which is basically based on eating foods low on the glycemic index therefore controlling insulin my levels. This happens to work well for me at this time since cancer loves sugar; sugar lowers your white cell count quite a bit (consider this before you unwrap that next Snickers bar). The purpose of the program is really for overall well being and can be tailored to your personal needs. I would eat small meals from specific food groups throughout the day and the diet encourages your body to gain more lean muscle mass vs some diets that cause a loss in muscle mass. I haven't read through it entirely yet, but a good portion plus Dr. D brought me up to speed.
I had blood drawn and a full work up is being one; the results will take a few days.
I also made an appointment with Dr. Ronald Hoffman for next week. (You may've heard his radio shows or read his books). http://www.drhoffman.com/ Dana used to work for him and she will accompany me. He treats a lot of cancer patients going through chemo primarily with vitamin drips. He can give me the formula and they can be administered by the nurse in my office for free. Dana and I both looked into an extremely alternative doc (so as to avoid doing chemo) however, although his regimen works very well, it entails a HUGE lifestyle change (including but not limited to 175+/- supplements/day) to which I know I will never stick. I've ruled him out.
Dana will come with me to Dr. H next week. By then I will have my blood results for him to review. I will have an answer of my choice of chemo by next Friday.
For the record, there are plenty of studies using alternative treatments with or without chemo that are poo pooed by many western dr’s and pharmaceutical companies. They do exist though. This isn't just voo doo stuff I’m talking about. If I can lower my risk with the “kinder, gentler” chemo with the help of the alternative stuff, I’d be a lot more comfortable with that.
I am not ruling out anything but I am on the fence about the 1st vs
2nd generation and what I can use as adjuvant therapy. I must do my due diligence. With all the access to info out there, it would be silly not to.
To do, or not to do... to do, what to do... that is the question........
Based on that information I may or may not choose to do chemo. Do I want to lower my odds 4-5%? I supposedly can by doing one of two chemo treatments for approximately four months. Or can I live with 13%?
This reflects if I were to take Tamoxophen but did NOT do chemo:
86 out of 100 women are alive without recurrence in 10 years
13 OUT OF 100 WOMEN DEVELOP RECURRENCE IN 10 years
1 out of 100 women die of other causes in 10 years
If I were to get chemo, I’d have two treatment options: 1st or 2nd generation, 2nd being the "stronger" of the two which means more side effects (e.g.hair loss) but lower odds of recurrence. (There is a 3rd option that is heavy duty and I ruled that out immediately.)
OPTION 1 (along with Tamoxophen);
CMF-Like (Cytoxan; Methaotreaxate; 5FU):
86 out of 100 women are alive and w/o recurrence in 10 years PLUS:
4 out of 100 women are alive and w/o recurrence b/c of therapy
9 OUT OF 100 WOMEN DEVELOP RECURRENCE IN TEN YEARS
1 out of 100 women die of other cause in 10 years
This would be administered by IV six times, once every three weeks. Side effects include minimal fatigue; it’s generally well tolerated; very little to no hair loss; 2-3 drugs are given to combat nausea/GI upset (Aloxi, Emend and Compazine if needed). One must watch blood count and only if necessary, Neulasta is given if white cell count is low.
OPTION 2 (along with Tamoxophen);
Second Generation Chemo Docetaxel (Taxotere) + Cytoxan:
86 out of 100 women are alive and w/o recurrence in 10 years PLUS:
6 out of 100 women are alive and w/o recurrence b/c of therapy
7 OUT OF 100 WOMEN DEVELOP REUCRRENCE IN TEN YEARS (7 vs the 9 from option 1)
1 out of 100 women die of other cause in 10 years
This would be administered by IV four times, once every three weeks. On the day following chemo, an injection of Neulasta is given to support the blood counts (vs only if necessary for option 1).
There is more fatigue, hair loss (i.e. balding), in some cases neuropathy (tingling of fingers); same 2-3 drugs are given to combat nausea/GI upset which is common as well as rawness of skin in mouth and a metallic taste.
I did not commit to doing either and advised the dr. I would get back to him. He not only understood, but encouraged me to think about it. I did ask him, If I were his daughter, what would he suggest? He said, Option 2. If I proceed, the chemo is done prior to the radiation + starting the Tamoxophen. (One can choose to start radiation half way through chemo but the cosmetic effects of the breast are worse than if one waits).
As for the radiation, met with Dr. Chada, but there’s nothing we can do now until I decide on the chemo. I know for sure though that I will do the radiation. Remember, radiation is to treat the area (e.g. le boob) locally vs the chemo which treats the entire body.
After lunch and slugging a glass of anti-oxidant-rich vino, I visited my friend Dana's office (she practices complementary + alternative med http://www.patientsmedical.com/Dana-Cohen-MD.html ) and she is setting me up on a program called First Line Therapy by Metagenics, a highly respected supplement company. There's a food plan which is basically based on eating foods low on the glycemic index therefore controlling insulin my levels. This happens to work well for me at this time since cancer loves sugar; sugar lowers your white cell count quite a bit (consider this before you unwrap that next Snickers bar). The purpose of the program is really for overall well being and can be tailored to your personal needs. I would eat small meals from specific food groups throughout the day and the diet encourages your body to gain more lean muscle mass vs some diets that cause a loss in muscle mass. I haven't read through it entirely yet, but a good portion plus Dr. D brought me up to speed.
I had blood drawn and a full work up is being one; the results will take a few days.
I also made an appointment with Dr. Ronald Hoffman for next week. (You may've heard his radio shows or read his books). http://www.drhoffman.com/ Dana used to work for him and she will accompany me. He treats a lot of cancer patients going through chemo primarily with vitamin drips. He can give me the formula and they can be administered by the nurse in my office for free. Dana and I both looked into an extremely alternative doc (so as to avoid doing chemo) however, although his regimen works very well, it entails a HUGE lifestyle change (including but not limited to 175+/- supplements/day) to which I know I will never stick. I've ruled him out.
Dana will come with me to Dr. H next week. By then I will have my blood results for him to review. I will have an answer of my choice of chemo by next Friday.
For the record, there are plenty of studies using alternative treatments with or without chemo that are poo pooed by many western dr’s and pharmaceutical companies. They do exist though. This isn't just voo doo stuff I’m talking about. If I can lower my risk with the “kinder, gentler” chemo with the help of the alternative stuff, I’d be a lot more comfortable with that.
I am not ruling out anything but I am on the fence about the 1st vs
2nd generation and what I can use as adjuvant therapy. I must do my due diligence. With all the access to info out there, it would be silly not to.
To do, or not to do... to do, what to do... that is the question........
Friday, October 12, 2007
Blister In The Sun
... my 80's music fans will appreciate that one.
Well, Karen clocked in 39.3 miles over the course of two days while schvitzing under the hot Indian summer sun. The NY Avon Breast Cancer Walk alone raised $10.2 million. (click on headline for full story). Mom and I did the easy part and met Karen at the finish line and stayed for the closing ceremonies. All the walkers (who stayed) marched in with 400+ attending survivors at the head of the line. It was very powerful, very pink, very poignant. People from all over the world (e.g. 22 walkers from Iceland) came for this event, many camping out overnight. After this tiring "feet", the finish line at Pier 43 is NOT where one wants to go to look for a taxi cab. As exhausted as everyone looked though, they were that exhilarated from their achievement.
A note of thanks for all of you who made donations (together, Karen and I raised about $5,000) and for everyone's continuing support. And of course an extra special thank you to Karen (that's her to the left!) for putting her best foot forward.
Thanks all!
Liz
Friday, October 5, 2007
I'd Like To Have Met This Guy, Buddha
"You will not be punished for your anger, you will be punished by your anger...
Let a man overcome anger by love.
--Buddha
When life hands you lemons, squeeze 'em and make lemonade!
I started to tally how many people have manhandled my lemons in the past two months. I ran out of fingers and lost count. And let's not forget the number of mammograms I had.
But, hey, it's all in an effort to ade the lemons so what do I care? I love these doctors! And I'm not the least bit angry about this lemon cancer thing. You know who should be angry? That woman who was erroneously given a double mastectomy. I can't imagine what kind of roller coaster she's been and will continue to be on. SHE has the right to sue for millions of dollars, not a woman who claims to have been sexually harassed by her boss. If she really sued bc she wants to make a difference to women in the workforce, let her take the money lost when she had to look for work and donate the rest to women who can't afford higher education or Dress for Success. We all know she'll even more from a book deal, etc.
Anyway, I'm starting to get angry now so I'll just go back to being grateful for the manhandlers.
Last reminder, it's not to late to sponsor Karen for the Avon Walk. She'll be walking aaallll weekend to help raise money and awareness for breast cancer. The link's on the left side of the page. Even $5 makes a difference!!
Love to all,
Elizabeth
Wednesday, October 3, 2007
I'm Getting a Tattoo!
And you're not gonna see it... or them. OK, so they'll look like freckles. Not exactly a cool thing. The Hello Kitty tattoo'll have to wait.
Met with the radiologist, Dr. Chada, at BI today. Lovely woman, very well spoken, thorough, and approachable. Another winner--I feel so lucky. Although we didn't establish the treatment plan--more of the waiting game--she did go over the whats, hows, whys, etc. To sum it up, we want to kill all the remaining cells that could be lingering around in the breast. More than likely, there will be a six week course of treatment. These take place five days a week. The first 4.5 weeks, the entire (right) breast is targeted; the last 1.5, the exact site of surgery. The armpit (location of sentinel node biopsy) is not intentionally treated but may get radiated. After we finalize course of action, I make a "sim" or simulation appt. We designate the actually spots that get treated which are marked with tattoos in order for the machinery to be properly aligned every time I go back. There won't be a treatment done this time.
This site is one of many that can answer questions about radiation + its side effects. Quick ease of mind, no, I won't be "radioactive" and won't be a walking florescent mushroom cloud. Please read this for some quick Q+As.
http://www.ucsfbreastcarecenter.org/radiationtherapy.html
So why didn't we finalize everything today?
During the next appt, I met with the oncologist, Dr. Malamud. A dapper man in a pin stripe suit, funky neon tie, elephant cuff links and nice tan (I asked him where he got it. He said, "Eh, New Jersey. No ozone."). Dapper, smart and funny. Who can ask for more.... The use of chemo is TBD. There's a relatively new test (has been used for two+ years) called the Oncotype DX. In essence:
The test was developed for women like me w/early stage bc that is hormone receptor positive and lymph nodes are negative.
A sample of the tumor tissue is sent to the Genomic Health Reference Lab in CA.
Ones "gene signature" is reviewed and gets translated into what's called a Recurrence Score: from 1-100, what's the likelihood of the bc returning within 10 yrs of diagnosis.
The higher the #, the more aggressive, the more likely the use of chemo. The use of chemo is based on the assumption that I am getting radiation treatment and taking tamoxifen (hormone therapy). If my #s fall in the middle, then even more careful consideration goes into the decision to use it or not. IF, and only IF, I were to proceed with chemo, it would be completed before radiation over the course of a few months. Chemo is used to kill anymore cells lingering in the entire body; the radiation is targeting just the breast.
Anyway, this is a great test which helps the pt and dr be more informed about the individual's cancer and enables the drs to tailor the treatment plan accordingly. The results will come back in a couple of weeks and will be reviewed w/ the dr on 10/17.
For info on this test, go to:
www.oncotypeCX.com
The use of tamoxifen would begin when the radiation is started. Tamoxifen is the only drug for pre-menopausal women and is also referred to as 'hormone therapy." This is not to be confused w. taking any synthetic or bio-identical hormones.
I took this from a website: Estrogen promotes the growth of breast cancer cells. Tamoxifen works against the effects of estrogen on these cells. It is often called an “anti-estrogen.” As a treatment for breast cancer, the drug slows or stops the growth of cancer cells that are present in the body. As adjuvant therapy, tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast.
For more info go to:
http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
A lot of info I know. In summary:
1. Wait, wait, wait, tap fingers, wait some more.
2. On 10/17 review Oncotype DX results w/Dr. Malamud.
3. Results determine likelihood of recurrence and therefore use or not of chemo (hopefully and likely I will test low on the scale and not see a definite need for it).
4. Review this info w/Dr. Chada who will plan out the radiation dates based on whether or not chemo is administered.
5. If chemo's used, do that for four months followed by six wks of radiation. If not, then book sim appt, get new sexy tattoos, and soon after begin the six week treatment.
6. Regardless of use of chemo, take tamoxifen for five year pd at time radiation starts. (five years being the amt of time during which it was tested on pts; it's not a random #)
7. Pray for no side effects of any of these treatments. Big OY VEY but I don't think anything intolerable.
8. Closing ceremonies for boob blog. (TBD)
Monday, October 1, 2007
TGIICGHADWIWTDD
I've a coined a new term: TGIICGHADWIWTDD or, Thank God It's I Can Go Home And Do Whatever I Want To Do Day.
This past Friday I was out with friends for happy hour(s). Great conversation, laughs, vino, atmosphere. We got into talking about how the past present future are all one. If you want to know what you did in the past, look at one you're doing today. If you want to know what you're future will be like, look at what you're doing today.
After a few hours, everyone got psyched up to hit another spot crosstown. I decided to part ways and go home myself. Them: No, no, no...come with us.... Me: No, no, no, it's nothing personal guys; I haven't been feeling great for a few days* and I think I just want to go home and relax so I can go out tomorrow. My friend, C, joked, Clearly Liz, we just want you to come out and don't care about your health, so come.
(* not feeling well was not bc related, rather a shitty case of food poisoning)
J had gone home about an hour earlier only to find himself at another bar and made sure to let me know he was having a blast. I later heard from the others the nite was fun and they got home at 1:45am.
So what brings me to write about all this?
While walking home, I knew I was doing the right this by calling it a night and I really, really wanted to finish the last two chapters of "Into The Wild" (I highly reco it as well as the movie). But this voice in my head kept saying, You "should" be going out and having the time of your life!! You dodged the bullet, Liz, rock on!!! Live like it's your last day!! Haven't you learned yet that life is short?!!?!??
I thought this for a good hour or so until I was finally comfortable in my bed (being a Murphy bed, it's got the doors open, overhead lites and shelves with pictures and books around me, it's like a little cocoon)reading this book I was enjoying so much. I was really content.
Then the next day I got the recaps of the nite and got that feeling again... why wouldn't you just go out? WHAT'S WRONG W/YOU...Don't you want to have more fun?
A few minutes later, something had agitated me. It was a phone call I got, it was actually trivial, but it bugged me.
And then I realized, OK, maybe I've gained some new perspective over the past two months, but I still am the same person, just a little scarred (pardon the pun). Certain things will still bug me, the things I like will not have changed. Maybe I'll pursue some interests that I've been meaning to get around to but took time for granted. Maybe I'll be more vocal about what I want in order to stop wasting time. But at that very moment on Friday, what I really wanted to do was go home, sink into my pillows and read the book. And I did it. And I loved it. And if that's the last thing that I want to do, so be it. I went "Into The Not So Wild" and it felt just right.
I can't wait til the next TGIICGHADWIWD.
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