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Old 12-03-2008, 06:54 AM   #1
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Unhappy Uterine cancer stage 3c after the surgery radiation

Hi all, Just joined this site today to tell you my story. I have had trouble for years with discharge spotting after my menopause. I just didn't realize that it was that important and it is. I went to gyno for years begging for a hysterectomy and was told that after menopause this would all stop. I believed him. MISTAKE! He did an ablation because I had some hyperplasia which I didn't know was pre cancer. No one told me. He did the ablation, sent me home and all was well for about 6 yrs.
First of all I might tell you to find the best dr. you can. I didn't realize that my dr. was more concerned with his teeth and his looks and his younger female patients than he was about his older patients. I am 61 now and a bother I guess.
I started bleeding in May 2008, so went to my dr. who almost killed me doing an endometrial biopsy. She couldn't get one because it wasn't her specialty so she sent me to my regular gyno who I might add is more worried about baby delivery than anything else because the girls are younger. First he did the endometrial biopsy, said everything was fine, bleeding continued for weeks, called and called and they told me not to worry about it. It was not a little blood either, I had to wear a pad and change a couple times a day. Then he went in finally and found a polyp, took that out, and then he told me the results were fine and not to worry. Another 2 weeks went by and the bleeding continued. I laid in bed and just cried I knew it was something worse. Finally he did a d& c and said everything was fine. Called the office 2 weeks later and told them I was still bleeding. They told me not to worry about it. I did. FInally I told him I wanted a hysterectomy which he set up, he didn't want to do it, because the hospital was building a new surgery unit and he wanted to use it. Set the hysterectomy up for a month later, he only does 2 hysterectomys a week. WHy oh why didn't I go somewhere else. I trusted him. So from may till august the cancer continued to grow. Finally surgery day came and he did the surgery. He comes into my room afterward and tells me everything was clean and no cancer. I was so relieved, but relief is short lived in this world. The next day he strolled in the room with a somber face and said that the fda would get on him if he didn't tell me that they found cancer. Cancer nestled in among the many fibroids. I was so crushed. I trusted this man, I don't know why. So, then he tells me that it is stage 2 and it is encapsulated. Ha ha ha, what a joke he is. Turns out that this little baby wasn't encapsulated at all. It was quite large and had broken through the uterus and had gone into two lymph nodes to become that dreaded 3c. Did a cat scan on me and tested my liver. Then set me up with an oncologist in our town that did not make me feel much better. He sent me to the brand new cancer center in another town. It smelled from the paint and the cheap carpet and made me so sick when I went there. Anyway, met wonderful caring people there that set me up for the radiation. The dr. said that it depends on my attitude and getting out of the bed and fighting. They did 34 treatments of radiation that made me so sick I though I would surely die. The radiation to the stomach area makes you nauseous and I threw up the first treatment and they had to get me special pills to take. Insurance company doesn't like that at all. Had to fight with them too. Burns to my waist and belly button and other private areas became very bad. Got the cream sufladine and used that it helped. I am still healing, and have to go see the dr. on the 9th of dec. to see when I go for another cat scan. In the meantime I am trying home remedies that I have found online to see if they will help. I am not taking chemo, I watched a lot of people take it and they still passed on. I am not going to spend my life throwing up.
So, I pray everyday for all the people that have these diseases, all the movie stars, all the little kids and for God to cure all the diseases. I think I would rather have whoever is in charge of the disease line to forget the diseases and just give everyone an age limit like say 85. I know that isn't what will happen, but with all the money they get for cancer there won't be any cure soon for it. I am one of the lucky ones, I have so so insurance. We have to pay 850.00 a month for it which I believe is a rip off. Anyway, my warning to all of you out there is to keep on those drs. Men do not know what a womans body is like and they think most of us are quacks. Change to a different dr. until you get satisfaction. do not ignore any bleeding after menopause especially. I hope I have helped someone if you need any more advice I am hoping to help women out there before they get the bad news. It says right online. Over 60 yrs. of age and bleeding is ia sign of uterine cancer. I found it, you would think the dr. would know it. Sorry to be so long. santee

 
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Old 12-03-2008, 09:26 AM   #2
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Re: Uterine cancer stage 3c after the surgery radiation

Nice to meet you, Santee. Gosh, what an aggravating nightmare you went through with those apathetic (to say the least) doctors. Doctors like that should be severely reprimanded, I think. If not for their imcompetency, you wouldn't be going through all this now. I wish you the best. I agree with you on your choice to not do chemo. I've seen the same thing. I very reluctantly was talked into chemo for breast cancer (which showed no sign of spread) when I was 38. It through me into early menopause, and I'm convinced it has cut my life short by 10 years because my bones are in bad shape from the chemo and the early menopause and now I am having pain in my uterus. I go for an ultrasound on Friday. I really blame the chemo from 1996 for alot of this. For radiation burns, I used aloe vera gel several times a day. It really rehydrates that skin. Take care, Santee.

I'll keep thinking good thoughts for you.

Diane

 
Old 12-04-2008, 06:18 AM   #3
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Re: Uterine cancer stage 3c after the surgery radiation

Diane,
Thank you for your words of comfort. I pray everyday that God will spare me. It is very iffy right now, but I am hanging in there. My kids and grandkids pushed me into the radiation, but I will stand by the refusal on the chemo. When my mother in law had colon cancer they gave it to her at home and the day we took her to the hospital they were still giving it to her. She looked at me and said should I take it before I go to the hospital? I said no Grandma, you need to go to the hospital. 2 days later she was gone. The drs. all knew she had very little time left, her cancer was on the outside of her colon and was picked up to late. She wanted the chemo though, she was a fighter. My main purpose is to make sure that all women trust their drs. and if they don't they go somewhere else until they get the right answers. Myself, I wouldn't even go back for my 6 weeks check up to the dr. that did the surgery. I will never forgive him for shoving me to the side so many times. I have a sister that is a nurse, in fact two of them. Both of them think he dropped the ball. they want me to file charges or sue him, but I don't have the strength right now. I am hoping that some of the home remedies I am trying will help. I already am done with the radiation and believe me it wasn't fun. Iknow where you are at, I pray for you and hope that your outlook is a lot better than mine. They seem to be close for that dreaded breast cancer cure now, which is great. I think they need to get to work on the stem cells. They don't have to use embryos anymore, I just don't understand why they don't start on people. I go for a cat scan either late dec. or early jan. I wish they would do another pet scan because I think they are better, but the insurance companies want you to use cheaper things. They are anywhere from 3,000.00 to 6,000.00. No matter that we have paid in to their insurance companies for years and my husband worked for 35 years in a steel mill to have insurance for us. Anyway, Diane if you need to talk, just send me a note. I pray that your bones will be better soon, and that you will be well. A friend, santee

 
Old 12-06-2008, 03:50 PM   #4
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Re: Uterine cancer stage 3c after the surgery radiation

Hi Santee,

Thank you so very much. I will also send healing prayers for you. I agree that they need to work more on stem cell research because I do not believe chemo is the cure. I think a hundred years from now, people will gasp when they learn people used to treat cancer with chemo. There's a possibility that, in the future, sound waves will be used to break up masses, so I've heard. I wish you the best with alternative medicine. There are some very interesting things out there to look at and consider. That's what I will do if this happens to me again.

I perfectly understand that you are in no shape to go after that doctor. Your energy needs to be conserved for taking care of yourself. It would be good if he could be reported, though, and maybe your sisters can do that for you. They just need the information to submit a complaint. I think a family member can do that for the patient. I agree about the insurance game. You pay and pay and pay, and then when you need them, they do NOT do what is best for you -- they do what is more cost-effective for themselves. It's enough to make you crazy. Also, thermal imaging gives off no radiation and can detect cancers the size of a grain of sand. But insurance doesn't cover them so you have to pay for it yourself. It makes no sense.

Thank you for all your good wishes for me. I will keep thinking good thoughts and prayers for you, as well. We have a healing prayer circle here, and I will add you to do so you'll get prayers twice a day for 3 months.

Take care, Santee.

Diane

 
Old 12-08-2008, 09:45 AM   #5
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Re: Uterine cancer stage 3c after the surgery radiation

Diane, Oh thank you and bless your heart for adding me to your prayer chain. I believe that we all have a purpose here on earth and when God wants us he gets busy. I am still going to fight though until I am told the results of my cat scan. I don't know what will happen to me then. My hands shake so bad and I do my best to not dwell on it, but i is hard to make plans when you don't know exactly how long you have. My daughtes boyfriends father was just diagnosed with throat cancer, and he went out and signed up for the golf course for the next year and bought new golf clubs. Talk about courage. Tomorrow is the checkup, and to tell me when I have the cat scan. He said probably after Christmas is over. My sister is going to come and fix dinner for everyone so I don't have to and we can all be together. I hope you have a very Merry Christmas and a Happy New Year! santee245

 
Old 12-10-2008, 01:03 PM   #6
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Re: Uterine cancer stage 3c after the surgery radiation

Santee. Also have stage 3/4. [Age 68] 6 weeks radiotherapy Nov 2007,front and back, but advised as to creams to use, bathwater temp etc so nil burns. Think you were short changed. Booked my usual trips with girlfriends throughout 2008 and will do the same for 2009. CT scans show no change. Think you should be planning your 2009 year to the hilt and I expect to hear from you this time in 2009 that you have had a ball. Think positive, the attitude of mind is so important.

Last edited by cejayb; 12-10-2008 at 01:04 PM. Reason: spelling!

 
Old 12-11-2008, 10:42 AM   #7
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Re: Uterine cancer stage 3c after the surgery radiation

Hi and thank you so much for giving me hope. I have been through a living hell. No one tells me anything, Monday I went for my 2 week check up after the radiation was finished and I was supposed to be set up for cat scan. Instead he set me up for a pap test in 6 weeks. I don't understand that. I am so afraid that it is in other parts of my body and I know it is important to have a pap, he told me that will be where it shows up. I don't believe that either, since it went out of the uterus, did yours break through? He said cat scan in 6 months. I would rather have it now while our insurance will still cover it, the copay and everything here starts all over again in Jan. I am planning to be around for awhile, I have 13 grandchildren (most grown), but one little one that I had while his mother worked from 9wks. to 3yrs old and I love him so. He has seen so much tragedy in his little life and he misses seeing me. I need to get over the fatigue, is that normal after radiation? I feel so weak all the time. Anyway, bless you for telling me how well you are doing, enjoy your trips. I am going to go gamble this summer with my wonderful sisters who have stood by my side the whole time. That is if my husband does not spend all the money before summer ha ha ha. Thank you once again. santee245

 
Old 12-11-2008, 01:11 PM   #8
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Re: Uterine cancer stage 3c after the surgery radiation

Yes Santee. had well broken through. Had a couple of tumors removed from bladder before hyster. Had lymph nodes on L. side removed and a small tumor was on a nerve.
I had both MRI and CT scans before radiation, so they knew where to zap, and one a week before the end of the radio so I knew how things were going, at that stage they knew where I was at. Had another CT scan 3 mnths later and another last month at the year date. See the oncologists every 3 months at present.
It took me 6 months to feel as though I had the 'get up and go' back. I was told that it can take up to a year as the radio is so debilitating. I had a sleep every afternoon and did not try to move mountains [hardest bit as I like to be on the move!!]
My advice....push hard for the CT scan, don't take no for an answer as your rights are paramount. [NZ has a totally different system, I had hyster done privately for speed...but all else is free.] Your peace of mind is so important.

 
Old 12-12-2008, 10:57 AM   #9
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Re: Uterine cancer stage 3c after the surgery radiation

Well, when I found out I just decided that my life was over. What wonderful people are on here and have given me a chance to see that life is not over with the diagnosis. My mother is in a nursing home and she misses my visits, I don't know if she misses me or not, but I went in last night to see her and she was happy just bossing me around. It took a lot of energy, but I see that I can not just lie in bed and wait. My daughter said I looked better. Thank you for all your encouragement. Only difference with yours and mine seems to be that they didn't take lymph nodes out and won't go back in and take them out because they say to leave sleeping dogs lie. That is what the dr. said. Mine were the lymph nodes around the belly button or aortic as they say. I go back in 6 weeks for the pap and I am going to ask him if I can have the cat scan sooner. I know that the surgeon or gyno that operated on me made a lot of mistakes and delays waiting for the new surgery to open so he had a nice place to operate in and not looking at the uterus before he closed me up. I tell every woman that I see now, if you don't believe your dr. find one that will believe what you say. I also had a lot of endometriosis and adhesions. I thought it was funny that I never knew that either. You would think they would know that. He said he spent a lot of time chopping all that stuff away. I have private insurance too, he could have done the surgery right away, but he felt nothing was wrong since he had done other tests. I don't know if I will ever trust another dr. again. I do know that I like my oncologist though he is very caring and listens to everything I say. I hope you and your girlfriends have fun on your trips. I don't get to travel much at all, raised 6 kids, 5 boys and 1 girl and lots of grandkids while parents worked. Now seems like they are too busy for me. I do have wonderful sisters, the one in Arizona calls me almost every night. Thank goodness for cell phones.
Again, thank you and God Bless you and each and everyone diagnosed with cancer. I know one day they will find a cure. santee

 
Old 12-13-2008, 09:54 AM   #10
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Re: Uterine cancer stage 3c after the surgery radiation

Hi again, SANTEE! I am so glad your oncologist seems like a gem. It means so much when they LISTEN to what you say. Yes, it is amazing how long you've had things, and the doctors didn't have a clue. I hope you can get the Cat scan sooner, too. I usually say, "My deductible has been met for the year, and I can't assure my insurance for the next calendar year, so if you want to get paid for the test....." That usually gets them.

I know how you feel losing faith in the doctors. It seems there are a few gems out there and we have to find them -- like a needle in a haystack sometimes.

I'm so glad you and Cejay can compare your experiences. Yes, I hope you have ALOT of good quality time left that you can enjoy. The radiation I had after the breast cancer did tire me out for awhile. It takes awhile to get all your strength back. Things like fresh organic vegetable juice can do wonders. Like organic carrot juice. Powerful. I have to cut it with other juices, though, because straight carrot juice is hard for me to drink because it's so sweet.

I hope you can find something fun to enjoy after the radiation. I went horseback riding after my radiation because I had never done it before and suddenly felt empowered to 'go for broke' and do things I always wanted to do but always hesitated.

I hope the prayers are helping. I'm thinking maybe they are since your daughter was saying you are looking better.

Keep in touch and please let us know how everything is going.

Diane


Quote:
Originally Posted by santee245 View Post
Well, when I found out I just decided that my life was over. What wonderful people are on here and have given me a chance to see that life is not over with the diagnosis. My mother is in a nursing home and she misses my visits, I don't know if she misses me or not, but I went in last night to see her and she was happy just bossing me around. It took a lot of energy, but I see that I can not just lie in bed and wait. My daughter said I looked better. Thank you for all your encouragement. Only difference with yours and mine seems to be that they didn't take lymph nodes out and won't go back in and take them out because they say to leave sleeping dogs lie. That is what the dr. said. Mine were the lymph nodes around the belly button or aortic as they say. I go back in 6 weeks for the pap and I am going to ask him if I can have the cat scan sooner. I know that the surgeon or gyno that operated on me made a lot of mistakes and delays waiting for the new surgery to open so he had a nice place to operate in and not looking at the uterus before he closed me up. I tell every woman that I see now, if you don't believe your dr. find one that will believe what you say. I also had a lot of endometriosis and adhesions. I thought it was funny that I never knew that either. You would think they would know that. He said he spent a lot of time chopping all that stuff away. I have private insurance too, he could have done the surgery right away, but he felt nothing was wrong since he had done other tests. I don't know if I will ever trust another dr. again. I do know that I like my oncologist though he is very caring and listens to everything I say. I hope you and your girlfriends have fun on your trips. I don't get to travel much at all, raised 6 kids, 5 boys and 1 girl and lots of grandkids while parents worked. Now seems like they are too busy for me. I do have wonderful sisters, the one in Arizona calls me almost every night. Thank goodness for cell phones.
Again, thank you and God Bless you and each and everyone diagnosed with cancer. I know one day they will find a cure. santee

 
Old 12-14-2008, 06:12 AM   #11
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Re: Uterine cancer stage 3c after the surgery radiation

Hi Diane,
Thank you so much for your support. I am getting some strength
back finally. I bought the juicer from jack lalane and although it
works well, it sure is a mess to clean up. I haven't tried the
carrots yet, but I am going to. The smell of fruit makes me so
sick to my stomach. Especially apples, I don't know why. I
probably should stick a cotton ball up my nose when I go. I
am going to get some oranges too, I love them so much.
Talk about insurance companies, my husband worked in a steel
mill for 35 years and lost his hearing there. After he retired the
insurance company decided to give us a break and set us up with
individual plans. They know that most people don't understand
the insurance stuff, so they tricked us. My husbands insurance
even though he is on medicare now is $200 a month and then for
the part D another charge every so often I think monthly not sure.
But mine, whoa hold on to your hat. Started out at 700.00 a mo.
Went to $850.00 a month and now that the cancer diagnosis is in
it has gone to $877.00 a month. We are farmers and luckily last
year was a good year for us. Unfortunately we didn't know there
was cancer lurking around. My husband finally bought that big
tractor he always wanted and a grain bin which broke us. So we
are back to hoping crop prices go up. They are really bad now and
I don't expect them to go up with the economy being so bad.
We have been worse off though, when the kids were little we had
some pretty flimsy Christmases, but we were together and the kids
learned life's lessons that money doesn't grow on trees, and every
one of them has a job and one made it through college. Now, those
little grandkids on the other hand, I am not sure about them. They
are so used to playing games all day, it is good that the schools
email the parents so they know what is going on. Anyway, enough
of that. I am glad for anyone that talks to me, I appreciate you
emailing me. I was at my lowest after that surgery, I just came h
home to lie in a bed and cry and cry. The dr. had the nerve to ask
my daughter how I was doing. I never went back to him. I never will. Thank you Diane. santee

 
Old 12-14-2008, 04:14 PM   #12
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Re: Uterine cancer stage 3c after the surgery radiation

Hi Santee -- Aha, you are ahead of me with the juicer. That's the kind I was going to get because, supposedly, it's supposed to be so easy to clean. But, apparently, that's not the case. They even do that infomercial where they say how easy it is to clean. Hmmm...I wonder what they think is easy about it. I've read that juicing some organic dark greens like kale, spinach, chard, etc. are also powerful boosters. So you are farmers! My mother's family were farmers, too. Like you describe, things can get very tight because there are no guarantees with farming. And then you have to buy your own health insurance. My friend from Austria nearly keeled over when I told her how much someone has to pay in this country per month for health care. And then, on top of those huge monthly payments, you have a huge deductible to satisfy. There's no doubt that this country is in a health care crisis. We cannot continue on this way for much longer. And over government does not take care of our farmers. It's shameful because the farmers provide our food.

Some smells became intolerable to me when I was on chemo, so I guess it could happen with radiation, too. I could not stand the smell of plastic. It would burn my nose. I could smell the plastic cups in the closed cabinet in the kitchen all the way from the living room. I would say to listen to your body and if it doesn't want fruit, that's ok. I'm glad you like oranges, though. I'll bet celery would make a nice juice, too.

I am glad to hear you are getting some strength back!

Diane

 
Old 12-15-2008, 01:07 PM   #13
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Re: Uterine cancer stage 3c after the surgery radiation

Hi Santee. You are sounding far more positive. Anything green, broccoli, sprouts, silverbeet top of the list. In a shallow dish, dribble of water, microwave for 8 mins, [test run this] I can manage that better than the drinks. [No cleaning up either!!]
Won't tell you about my insurance etc, you would weep....and we moan about our system.

 
Old 12-16-2008, 03:38 PM   #14
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Re: Uterine cancer stage 3c after the surgery radiation

Dianne,
Yes, I bugged my husband to pieces for that Jack Lalane juicer. The ads on tv were great and there is 90 year old Jack with his wife standing there as healthy as can be from juicing. He swears by it. So, I finally got it after my son said get it for her dad she needs it. I can say one thing the juice is delicious, but that is one of the reasons I can't stand the smell of apples now. It was the first thing I juiced when I got it and I can't forget the smell. I started too soon after surgery and with the radiation making me sick the smell just stuck with me and I can smell an apple when I walk into a store. I didn't bother jucing the oranges, I just squeezed the juice out of them and didn't have the clean up. It comes apart in a lot of pieces and I might not have had it together right because a lot of the leftover rind and stuff was inside the machine so it all had to come apart. It does really get all the juice out and works well and the basket is one of the easiest I have ever seen to clean. I bought the silver one and buy the time you get done with s&h it was 159.00. I am trying the apricot seeds now, I bought that magic bullet, it grinds up the seed and then I put it in an empty capsule so I don't have to taste it. I guess they are pretty bitter. Well, I don't guess they are bitter. Nasty in fact. Hard to find too, but my sisters went and found me some. I try anything I can see, but don't know if it will help. I find myself feeling spots all over myself now to see what has happened, is that normal. I am finally getting out of bed and doing some stuff around the house, Christmas is coming and we are just going to get together family wise, I told them all no presents, the only thing I want is to be healthy. Funny when you get sick nothing else really matters anymore, or is important enough to dwell on.

Yes, the farmers are under rated that is for sure. My husband told me he will probably die in his tractor. I am glad he was able to get one with air conditioning in it so he will be comfortable. It is hot
in those fields. I think the worst is the wheat, it is always hot and dusty and it has to come off when it is ready even if you aren't. We don't have to bale hay anymore, last year we got rid of our cattle, none of our boys wants to farm and they would get out and roam the roads and what a job convincing them to come back to the barn. The cows that is, not the boys. Although they did plenty of their own roaming LOL I do have stories of life on the farm after 36 yrs. of it. I am hoping that Obama gets us some cheaper health insurance, people work all their lives and when they get ill they lose everything just trying to pay the drs. I have always wondered if they had a cure for cancer and they just don't want anyone to have it because a lot of drs. will be out of work. would a govt. be that cruel? Well, I am supporting anyone that works toward one.

Diane if I don't hear from you again before Christmas you have a happy and merry Christmas and a wonderful New Year. santee

 
Old 12-16-2008, 06:53 PM   #15
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Re: Uterine cancer stage 3c after the surgery radiation

Hi Santee -- You know, I have wondered the same thing for years about a cure for cancer. People get so mad at me when I voice it so I don't say it anymore. But when I worked for a major pharmaceutical company and saw how extremely lucrative chemo drugs were to them, I had to wonder why would they ever WANT a cure and end that kind of money. Like I said, people almost curse at me when I dare say such a thing, but when money is involved, you have to wonder.

I guess the radiation has the same effect as chemo when it comes to food. Now I understand why you don't like the smell of the apples. I read (too late) that you should never eat your favorite foods when taking chemo because you will develop an aversion to them. This was after I ate pizza. Well, it's true. I didn't want pizza for 2 years and since then, I have never had the strong desire for pizza again that I used to have. So I understand completely about the apples.

Well, the doctor finally called me back about my ultrasound results. I guess it's good news. I have a large cyst on my right ovary and a polyp in my uterus. So two things are causing all these symptoms. She cannot rule out cancer yet, but so far I think it looks like 2 innocuous things. I must have not have been thinking when I told her I didn't want to do anything about it. I guess I figured since it wasn't cancer, I didn't want surgery. But I'm in pain, so I think I will change my mind. She is going to run the bloodtest for ovarian cancer (because they do that when post-menopausal women get cysts) and another ultrasound to watch it and the polyp next month. I can't believe I'm 5.5 years post-menopausal and all this stuff starts up. My over-production of estrogen has caused so much trouble -- extremely dense breasts, 5.5 years of daily hot flashes and rage, and now all this junk. Oh well, it's always something.

Anyway, it sounds like you are really doing well with that juicer! And the apricot pits. They taste a little like bitter coconut, do you think? That's what I remember from eating them when I was a kid. Or maybe that was peach pits. I forget.

You have a nice Christmas, too, Santee, if I don't catch you here again! I hope you really enjoy yourself with your family! Talk to you soon!

Diane

 
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