natural girls
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Thanks for the support, everyone. It sure helps to know there are others out there who understand how warped and weird this whole cancer journey can be!
I'm usually the type who would be very direct and assertive if I felt my toes were being stepped on..(OK, I'll admit, sometimes agressive, even.) This long haul has certainly worn me down, because since the day at the rad clinic, I've noticed my "fight" is all but gone.
I'm hesitant to complain at the beginning. Like sending bad food back to the chef - and giving him an opportunity to spit on it. I'd rather just leave without eating, if you know what I mean. But I'm loathe to start all over again. So I'm trying a new technique someone told me about how to work through your feelings when you've been wronged...
You start out by imagining the worst punishment ever, and work backwards from there until you figure out what would make you feel better about it...
LIke, should those techs have to die for what they did to me? Maybe not....
Should I get to maim them? I'd like to have at least kicked them, but it's too late now...
Would I feel better if they are fired? Counseled?
I'm going to try to see if I can figure out something that will make me feel ok about going back. I don't know what it is yet..
Maybe I will carry a water pistol with me from now on, and tell them any time they treat me mean , I will spray them in the face... .
It works with puppies~0 -
Pill, you were treated badly by those rads creeps. They sound like they have nothing but contempt for the patients. Your emotions are warning you about this whole set up. If they had trouble knowing what to do with a size 14 woman, they aren't qualified to give you rads. What other stuff don't they know about?
Yikes, if your upper arms don't giggle at our age you should see a doctor. Same with thighs.
But the main question is, exactly what is your goal in getting rads? You mention hyperhermia which is a systemic treatment. Rads is only a local treatment which helps a little bit to prevent recurrence in the breast. But rads has no "survival value." If anything you may die sooner from your coronary arteries being radiated. Those stats have been posted here.
I think it was a good thing you saw the writing on the wall this week. The experience may cause you to rethink your strategy.
Hugs, Pill. If I could go to that rads place and spray them with pink whipped cream for you, I would. But maybe you should think of it as "F**k 'em" and say you want more time to think about this. Vivre will attest to how we beat ourselves up afterward when we don't think something like rads thru.
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My goodness Pill-I think you are having the same experience I had, well almost. When I started rads, I was still in my angry mode. I was so damn mad about the whole cancer thing and I was mad at everyone in my life who had ever ticked me off or been cruel to me. I was going through each day, just cussing it all. When I started rads, I was just scowling. I hated the whole idea of getting fried but I was not arguing at all because my doctor(now former) just kept telling me not to worry, I had a great team behind me. If I read anything contrary I got reprimanded so I stopped and just went along. This made me even agrier because I always thought I had control of things and I hated giving control of my life to doctors. Well the first few days of rads were a nightmare for me. I was so scared and a real bitch. But I had some very professional, but very patient nurses and a great rad onc so they kind of softened me. I can not imagine having male techs. Yuck! My hospital at least has female techs for women, and male techs for men, As I laid on that damn cold table shivering, they even put warm towels all over me, and played whatever CD I brought, so they were very nice. But I still was so freaked. At the end of the first week, I just burst out crying, and I apologized to the techs for being such a bitch, but I told them how I hated hated hated doing this. They were very very kind to me after that. I still cried a lot. I had what I called my Monday meltdowns. The thought of going every day for the rest of the week just got to me. They would give me hugs and then fry me. Their attitude toward me made me feel better, but I just never got over the anxiety of the whole idea. I would walk in and say to them "I just don't understand how this is good for me because I know radiation causes cancer." Then they would patiently give me some speech about how this is not too much radiation, blah blah blah. The only way I could make it through the day was to go and walk it off. I would run out of there, eat an apple(I thought I needed to do something to counteract the poison) and then I would stop along the river path for an hour, mad at the whole damn business of cancer. But you know what? I stumbled on something great. One day during my stomp, my dear aunt called and I just unloaded on her. She told me that I needed to find a way to let all of this anger go. It was so hard because it was the holidays (I did rads from Nov to Jan too) and everyone around me was pretending I was fine because I did not have to have chemo, so what is the big deal. I had some really nasty comments from family members. But my aunt calmed and told me that if I was going to get rid of cancer, I needed to get rid of the anger that fed it. So day by day, on my stomps, I let go of more and more. I still had my meltdowns on Monday's, up until the last day. But I was healing my heart On the last day, I literally ran out of there, and went to the river where I played BrandNewDay by Sting on my Ipod. I cannot tell you how wonderful I felt. I had listened to his music all along, but did not play this song. I saved it for the last day. It was the end of January and freezing with 8 inches of snow on the ground, but I sailed through that walk. I was no longer stomping in anger, I was floating on air, I was so euphoric. So hang in there Pill. You will walk out of this a better person. And when you finish treatments, think of the mantra that has been my inspiration-"Don't look back, except to learn"
Oh, one more thing. I never had any side effects from rads except a very light sunburn at the end. They kept warning me the fatigue is going to hit but it never did. Finally, the last week, the two rad oncs met with me and were just amazed at how I was doing. I was glowing, had lost weight, and was bounding with energy. In fact, I had taken to parking on the top floor of the parking garage and using the stairs, kinda of as "a spit in your cancer, you are not going to stop me!" I could run up the stairs and not even be out of breath. It was my little Rocky moment over cancer. The oncs told me they were going to use me as an example of the difference exercise makes on treatment, which they had been reading about, and I was proof positive. So I now think of them telling their new patients about me and it makes me smile. I also took a few supplements, and they seemed okay with it. So even though I hated every day of rads, and still wish I had never done it, it forced me into the habit of eating an apple a day, taking supplements and exercise and for that reason it was not a waste of time. All that walking got killed my cancer. As for the radiation part, I think it is a crock of $H!+
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HmmDeni-your comment about High School Musical got my creative juices going. I can just imagine "A Chorus(of survivors) Line" The ideas are just turning for the words. Anyone want to help me write a parody? I can think of a lot of funny things to say with the song "Tits and Ass". Okay, now I am psyched. I am going to call up the folks at my local improv and work it out. It will be our entertainment one night at the prevention convention. Let me know of any ideas you all want to put in. The ending of course would be singing "WON!" Weeee Have WON!"
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I wish there was a celebrity at Second City improv outfit in Chicago, Vivre, who could do a show on the BSing we have to go thru. Pill could consult, brandishing her water pistol.
We need a kind of "Follies." We need an expose. Humor is a powerful tool!
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Pill: I also had a really negative rads experience. When they did the "mapping" or whatever it is called, I had a fit. I had to fight to get female technicians and the head technician was pretty obnoxious about it. In the end I had only female techicians; wore a fleece jacket in the waiting room (which was co ed) rather than the hospital gown they wanted me in; and did things my way. But it was very stressful. My two main technicians were very cold and then along came valentine's day--I baked two pumpkin breads and gave them to the techs on valentine's day and the humanization came through. I did it because I felt I could not stand to continue to go to that place and the result was that the techs became much sweeter and more open with me. Oh, and after my fit, I never had a male technician.
All of you gals are in my heart and prayers everyday.
Hugs
Mandy
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I did the traditional/conventional chemo for my triple neg tumor with 1/node and was also "mapped" for rads last Wednesday. I, too, left disappointed and became tearful on my way home. My techs were polite but very detached as though I were only a number. OK, OK-I know that truly I am only just ONE of the thousands having to do this but..REALLY. I asked them why they weren't allowed to talk to the patients. They didn't seem to like that. The rad onc and her PA are awesome, but the practice has moved into this HUGE newly built cancer center. Now they don't have enuff patients. I was told that they were open until 7 pm and that I could work sessions around work. Now, the last session is at 3:45. So, I'll have to leave work early (can't go before work 'cause they don't start until 8) daily for the next 6 weeks. Pill-I know how you feel......They had to adjust my tattoos to avoid the "creases"...I guess they could have just said "rolls of fat" but again, they were polite.
I had not heard that I should not take green tea extract/green tea during rads until I read it here. Anything else that we should avoid? I have been reading this thread and have made a list of supplements that I've started to take until I see a ND in January.
As far as the Musical and Follies, as my uncle said-sometimes you have to laugh to keep from crying.......So count me in!
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Oh wow you folks really have been dragged through it....
Thank you so much. I do feel so much better - I know I can take all these tips and feel stronger next time I go - because truly, I don't think it was 1 thing that made me lose it - rather it was all the little things compounded - Mandy mentioned about the coed waiting room, and what vivre said, about going in with all that anger and mistrust to begin with. (The worst part was when I objected to photos, and asked why. The little putz told me "they're for the chart". I said, "what kind of answer is that?" and meanwhile the little schmuck was just snapping pics as fast as he could....
effin filth and foul!!@!!
Oh, Lucy, if you only knew how much searching I have done for studies that would put me in a grey area regarding rads. (I am not early stage - I had 8 pos nodes out of 9 and that was AFTER 4 rounds AC and 4 rounds of abraxane.) I fought like hell to keep my breast -
They have all these stats that say I reduce my risk with rads - (and yet, in my heart I don't BELIEVE any of it. That's the real crux of the problem! )
I did put the brakes on how much I would let them do - no prophylactic tx - only areas where there definitely was cancer.
I love your idea about coming in with the water pistol. Can I ride in on my new cow? ???
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Viv - the main song from High School Musical is "We're All In This Together" which is appropriate in our case too!
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Please forgive me if this question is inappropriate: I recently read (can't remember where) about someone who discovered their bone mets by accident. Literally. According to this person, there was a car accident and at the hospital, X-rays were taken as a precaution to see if there were any broken bones. And that revealed bone mets.
Is it really possible to feel "great" to "fantastic" (high energy, sleeping well, good breathing, excellent digestion, able to walk 7 miles without even feeling it, etc..., etc...) and yet be harboring mets without suspecting anything? Does anybody know?
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Do you know that this person was feeling great? I would guess there were signs that were ignored. I thought that bone mets was very painful.
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Hi ladies,
Does anyone have a good remedy for general edema? I have lymphedema in my right arm (I can deal with that), but am noticing for the last couple of days swelling in both arms/legs and feet and face. Just feeling (and looking!) more bloated than usual. I am drinking tons of fluids..... wondering what others do to shed water.
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Yazmin wrote: Is it really possible to feel "great" to "fantastic" (high energy, sleeping well, good breathing, excellent digestion, able to walk 7 miles without even feeling it, etc..., etc...) and yet be harboring mets without suspecting anything?
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I don't know so much regarding cancer, but once I had a different condition that crept up very slowly. It was so slow, I didn't notice my declining health. Feeling crappy was my "normal". It wasn't until I was cured that I realized how much it had impacted me. I had forgotten what feeling good was like.
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Daffodil, are you urinating all the water out? What are you doing to get the lymph moving. Are you bouncing on a mini tramp? It is great for the lymph system. Also, if you are retaining you might want to try the salt loading as prescribed in the iodine therapy. Are you on iodine? Here are some links:
breastcancerchoices.org naturlathyroidsolutions.com
I am reading Dr. Brownsteins book, Salt your way to Health. Salt and iodine help to clean out a lot of buildup of toxins.
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Pill, I hated all the photos taken all the time too. It was such an invasion of privacy. To think anyone can look at my records and just see photos of my fried breasts. It really pissed me off too! And now they want to put all our health records on some national computer that any hacker can get into. The whole idea just plain stinks! We will have no privacy at all. Who's to say some govt. hack cannot look at our records and just say, Hey you are too fat, so forget about further treatment. I just do not want those pictures in my records. And I hate the damn tatoos too. I would love to get rid of the effin things. I hate being reminded about the whole rads nightmare when I see those little red dots.
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I already hated the commercialized pink ribbon mess even before I was diagnosed. Some of y'all's posts here made me think of something I posted on the Susan G. Komen Facebook page a week or two ago:
To my fellow breast cancer sisters, I urge you NOT to support Komen sponsors who willfully continue to include known carcinogens in their products, such as Revlon and Avon. We can overcome breast cancer, but it won't be by wearing a pink ribbon while we financially support companies that CONTRIBUTE to cancer! Focus on PREVENTION -- far more powerful than the earliest detection!
Heh heh, I'm a naughty breast cancer patient, aren't I?
All the rads talk is scaring me. I may not be able to do it for financial reasons only (because my insurance switches to a crappy one in January). I know my doctor will scold me and tell me I'm twice as likely to get a recurrence without it. Need to research the pro's and cons and look into the absolute benefit etc... girls, if you knew then what you knew now, would you still do rads? If there's a chance it will prevent me from getting invasive cancer down the road, I'll find a way to afford it.
I sure wish there was a study that compared recurrence rate between DCIS patients who didn't get radiation, WITH and WITHOUT total diet/lifestyle changes. *sigh*
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Ah yes, those little tattoos. Who knew that one day not only would I have a breast implant, but also tattoos! I'm so sorry that so many of you had bad rads experiences. I guess for me, chemo was such nasty business that rads was a walk in the park compared to it! I used circumin every day and 100% aloe vera, and it helped immensely. I didn't burn at all until about 3 days after my last treatment. Just got a little bit burned in one spot. I'm sure the circumin and the daily green smoothies made a big difference! My techs and the rads docs were amazed at how well my skin did.
I know that it is really hard to start new treatments or think about what you should do next. I've said yes to most things, but I'm about to start telling my doc no to several things she thinks I should do. I'm finally starting to trust my inner voice and I know that all the work I've done to clean my body up is starting to pay off.
Julia, since you said you'd like to hear one of my healing songs, I thought maybe I'd share with you all a website I put together that documents my cancer journey by way of my hair mostly! It's pretty personal, but the whole point of doing it was to share it with my bc.org sisters. I posted it on the "hair,hair, hair" chemo forum several months ago, but thought I'd post the link again for all of you. After losing all my hair to chemo, I was so curious as to how long it would take to grow back, and I scoured the web for ideas of what it would look like in two months, three months, etc. I couldn't find much, so I resolved to document the return of my hair with weekly, then monthly photos. I wrote a song to go along with it that pretty much sums up the journey thus far. The song is called "Building Me Back Up" which I think is a sentiment you can all relate to. You can check it out if you like at:
https://netfiles.umn.edu/users/frah0005/www/HopeStrength/DeAnn/PortraitGallery.html
I am NOT a professional singer or guitar player, so please forgive the recording quality! Julia, maybe your dogs will enjoy howling along!
(Oh, and just in case you were worried about the hair color choices you may see me using in the photos, I found an awesome colorist who uses totally chemical free, non-chlorine hair color. She even knows about hormone balancing and raw foods. How cool is that?)
Good night to all!
DeAnn
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I did not get tatoos with my rads. I asked why they needed them and they said they could use markers. About once every week they'd check to see if the marks were in the right places. I have one bra that is green from the markers but I don't have tatoos. I asked how many tatoos I'd have had since I had about 14 marks and they said the same number as my marks. And when they did the boost, I'd have had those marks as additional tatoos. So Pill even if they did the initial tatoos, you can ask them to use markers for any other spots. Except for the awful invasion of privacy I found rads less difficult than chemo. I did not burn. I kept my skin dry with corn starch and at night and right after rads I'd use a cream on it.,,,my girls cream was the one I liked best. During the last week, I used emu oil. I did have accupuncture once a week during rads so perhaps that did help.
Take care everyone.
Mandy
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Anyone using Activamune? Looks like it has many of the supplements that I have been buying separately in it.
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DeAnn - what a beautiful site you created. Your photos are amazing and they along with your song are so inspirational. Nice!
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DeAnn: As usual, I agree with Deni: you have created a most beautiful website. I love your song of hope, and your hairless pictures, and your just-as-beautiful family. Keep up the good work!
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I can't remember if I posted that I learned that Japanese green teas have the most cancer prevention stuff in them.
One that is recommend is Sencha. I bought some and love it.
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DeAnn: that is a beautiful site you have created and your music is wonderful too.
Merilee: thanks for posting that food pyramid.
Everyone have a nice Sunday
Mandy
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Synthesis of Steroid Hormones From Cholesterol
Cholesterol is the precursor to all steroid hormones, including:
- Glucocorticoids (blood sugar regulation)
- Mineralcorticoids (mineral balance and blood pressure regulation)
- Sex Hormones (many functions)
Cholesterol is the precursor to a hormone called pregnenolone, which has important functions itself, but is also the precursor to all other steroid hormones.
Pregnenolone is converted to progesterone, a sex hormone, which in turn is converted into cortisol, which regulates inflammation and blood sugar, aldosterone, which regulates mineral balance and blood pressure, or testosterone, a type of sex hormone referred to as an androgen, which regulates libido, muscle mass, and plays other roles.
In females, and to a lesser degree in males, testosterone is further modified, undergoing conversion to estradiol, a different type of sex hormone called an estrogen.
Everyone is so concerned about high cholesterol, but did you know that very low levels of cholesterol are unhealthy. Death rates related to cholesterol levels are a J curve--over 250ng/dl and under 150ng/dl --mortality rates rise. Why?
Cholesterol is manufactured by the liver in response to the body's need for two things: bandaids and hormones.
Cholesterol is nature's bandaid, providing the necessary materials to shore up damaged tissues and support cells.
Cholesterol is also at the center of every steroid hormone: estrogen, progesterone, testosterone, cortisol, DHEA, aldosterone. The word steroid comes from "sterol"--the cholesterol molecule at the root of every steroid hormone.
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Thanks Fairy. So we need cholesterol to keep our hormones balanced. Lower cholesterol, lower hormone levels = cancer. Do I have that right? Makes more sense now.
Merilee- thanks for that food pyramid. I printed it out to hang in my kitchen to show my kids! I have been using The Republic Of Tea Matcha Green Tea. We love it. I read somewhere that Matcha has the most polyphenols and is the most potent green tea.
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Hi Deni! I believe that is correct, but I am still learning about this stuff! I just read in SS book "Breakthrough" about the cholesterol/hormone thing, I was suprised to see the connection also, its very interesting! More stuff to learn!!!
L
ox
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Hi everyone,
Just a quick stop by to say hello. Interesting stuff on cholesterol. My DH is on Lipitor and I'd like him to come off it. I think convincing him that high cholesterol is not necessarily a bad thing is going to take some doing.....So much more reading and searching for info to do. There's so much out there that our Dr's are not telling us probably because they don't even know themselves.
Terri
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Terri ~ Has your DH had a test to determine his coronary calcium levels? My cholesterol has been higher than normal since finishing tx, in spite of a much healthier diet and adding a lot of exercise to my life. But my PCP said she never puts patients on Lipitor or similar drugs for a high cholesterol score alone (thank goodness, or it would have been one more thing I would not agree to ) -- but that you need a Coronary Calcium Test (some kind of scan) to tell if you truly have the kind of cholesterol problem that can lead to serious heart problems, including sudden death. D.
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Deni
Is that Matcha tea the one that is a bit thicker in consistency?
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