BarbarainBham

Barbara-I didn't say anything to cause Malso to worry--Personally, my husband had spots on his lungs at the end of his Naval service of 20 years. Nobody ever asked him if he had asbestos exposure-the few times he tried to talk about it, doctors-civilian, military, and VA-all were dismissive. They told him because he was a non-smoker that they didn't need to worry about him having lung cancer. His father died from a combination of mesothelioma and heart disease caused by bad lungs. The kids tried to sue doctors, the Navy, and the Air Force, but federal law has it swept under the Mesothelioma suit-where nothing is done what so ever.

Me, I'm OK with my scar tissue. He wasn't. I don't want Malso to think the worst. I'm glad that Malso has a doctor different than the many doctors that cared for my husband during and after military service.

This wouldn't post on your question, so I pasted it here.

Sounds good to me. And congratulations!!! Since I was diagnosed with an incurable cancer-and I'm supposed to be dead by now-and I don't even have a secondary cancer from the radiation---I'm doing my happy, happy dance. I did that last week, when I realized that the toast around my hamburger wasn't making my lip raw. So I did a little happy, happy dance.

I think that we'll always have a certain amount of fear. That we'll always be fighting the side and after effects of the cancer and treatment. I'm sure that others can think of some more-Always have and be. And some of this is classified as 'battling' by some people, but I think that you can relax and do a happy, happy dance too.

Hi, a lot of folks use Himalayan salt for flavor because it has minerals in it that are difficult to get from grocery food. In lieu of that, a choice is dried seaweed. Food can be very dull if one is unfamiliar with spices to liven up taste. Also, when one adds a bit of salt from scratch, relatively little salt is actually used compared with what commerce throws into a single can of nearly anything.

Barbara-one of her questions is if her Bi-polar caused this. We are letting her know that cancer patients without bi-polar also have this problem. She has a tremdous burden to carry cancer and mental illness, but she should know that she's having a problem that's becoming more common. In the past, people would often sort of disappear, slip out of your life, but now some people confront you and blame you for everything that's wrong. I can't imagine that burden, and it's made worse because of her mental fragility. She knows that she's bi-polar, she told us. She's worried about her manic-high spells. Considering that, she probably has mental health care. She just wants to know if other people had this problem, and how the problem was handled.

Just dropping you a message to check your email notifications. Let me know what you see in your mailbox.

My grandfathers were cowboys and horse cav. I was on my first round up when I was 4-a normal age. My grandmothers chopped wood and cooked on wood stoves until the i950s-they were born in the 1800s. I cooked on a wood, coal, and fuel oil stoves for over half of my life. I used 2 man buck saws to take down 100 ft Ponderosa. I split and chopped my heating and cooking wood. I shoveled coal. I broke horses, I put up fences, I steer roped with the boys on the Contental Divide on the Navajo Reservation.
I canned my food and made jelly on a wood stove. I sewed most of my clothes, which my grandmothers taught me to do, besides knit and crochet. I went berry picking with a high powered rifle in case a bear came out. I did this with my grandmothers, and I did this with my children. I learned how to kill a chicken, gut and pluck it, and then fry it up on a wood stove with my grandmothers.

They didn't dance in the green sparkling sea under a california moon, but I'm sure that they had romance with my grandfathers that I can't think of. Because of their incrediable old age, they had TVs, one saw the moon landing. I was better saddling a horse then they were, but they were better harnessing a horse and driving a buggy than I am. I'm good in packing a horse up to haul in groceries, and one grandma and I snow shoed with packs.

So tell me how different my life has been-except that I drove cars and trucks? they never learned to drive at all.

I grew up in Los Angeles. It was fields, hills, homes with horses, goats, and a milk cow. Women made their own cheese. Today, in many parts of LA- Mostly the Spanish areas, people still have roping horses, and they go to International Charro contests. babies start riding when the are about a year old, as mine did. I'd go with the Japanese kids, and we'd ride the plow mules out for water. Have you ever hunted for a meal? or trimmed a horses' hooves? braided a horse tail?

Barbara, when you travel around and grow up, and you hear surgeons and medics complain about how sick they got after mass surgery from mass troop accidents or just behind the frontlines, They blamed it on the heat in a canvas tent out on prairie forts before WW ll, the Pacific Islands, Phillipines, Okinawa and North Africa- They all said that they thought the mixture of canvas and anesthesia left them somehow sick. Then Navy corpsmen and Naval doctors complained about the same thing, but the smell of tiny surgery rooms, no ventilation, and the anesthesia. They all had this rare cancer start in the same place-in the middle of the small intestine. The same with my aunts that were Franciscan nursing nuns that administered anesthesia.

My family doctor wasn't in the military, but he was an anesthesialogist that was on call for Mt. Sinai in Hollywood and UCLA, besides his normal surgeries. He had the same thing. He often commented about the military personnel that had this. He thought that it was the anesthesiology. He died 2 years after my father did.

I like what you said to Boise. I think that pleasure and happiness often comes from what some consider to be the small insignificant things, a hug a smile, remembering the first smiles from my babies.

Just offering my thanks and support, BarbarainBham!!! You are awesome and I think the vast majority of us feel like you do with regard to the boom and the geek. (And, perhaps now, NNN and lujos??? .... ugh)

Hi again. I went to see the endo doctor about my thyroid and he said my symptoms are because of depression. Boy am I ever mad. Going to get a second opinion because depression doesn't interfere with your swallowing your food. My husband is on Lisinapril for his blood pressure. Didn't know it could be used for other ailments. The clinic ran a complete CBC and that is how I found out about my stats. I have fatty liver disease so my albunim level is always up. Not very high though. I have an appointment with my GP on the 17th and I will surely be talking to him about these levels and getting a referral to another endo doctor. When I initially contacted my doctor about the creat level he called to say that mine usually runs between .9 to 1.1. But, I have a half hour scheduled with him on the 17th and we are going to have a long conversation about my concerns. Keep posted on what you find out, if you have anything done?

What did I ever do to you ?You don't even know me ,I don't have an attitude , my family and friends all love me ,they just did not wanted to donate money to a fundraiser , because I don't get everything they donate and have to pay taxes on it,they are all willing to help me anyway they can ,I guess I made a mistake and I'm sorry I judged them when I should have known better and I wish you wouldn't judge me when you don't even know me ,I'm a caring person and love my family very much and you really hurt me when you responded to my updates ,it made me angry and I know what you gonna say that I got to stop being such a cry baby and grow a thicker skin , but I am who I am and can't change that ,sorry .

Thanks for your great advice but if I postpone my surgery I still have to pay the same ,I came here to that website to get support and not advice I do not need right now , I guess you don't know that insurance never pays everything and I don't have $5000 laying around , maybe you do but I don't sorry ,but I'm not rich and why is it so wrong to ask for help when you battling cancer I thought people where are going through the same would understand but I guess I was wrong again .Why do you think there are fundraiser for cancer patients and why there are so many places you can apply to get help paying for your care and believe me I tried all of them but either I'm to old live in the wrong state or their ran out of funds , that's why I'm doing my own fundraiser and that was the second time you gave me advice I really don't need right now ,first with my son and now this ,just to let you know I love my son and I will worry about him no matter what and he loves me that's why he took it so hard when I told him that I have breast cancer , if he would react any differently I would think that he don't care and he don't love me but his reaction showed me that he loves me and I know how the world works , I'm not asking them to pay for my surgery I'm just asking for some help but I guess that is something you don't understand ,
Please do not respond to any more of my updates or questions

My oncologist and surgeon both said radiation and tamo were possible choices, but they wouldn't insist it was essential at this point. That is why I am looking for further info. Talking with the various doctors involved in my treatment, I have become more aware that each doctor knows a lot about their speciality, naturally. The surgeon had limited knowledge of diabetes; the endocrinologist has little knowledge of surgery, etc.

Thank you for your helpful feedback on my question about sleep. Sometimes the old tricks, like milk and a warm shower, are all we need. And turning off our brain can be the hardest part of all. I'm glad you've found some strategies that work for you.

Thank you for giving feedback on my question. You have a quite a few challenges and a complicated situation. Has your doctor suggested you meet with a dietician?
I'll be letting the community know when my book is published.

Hi Barbara thanks for the advice. It seems that dealing with the doctor causes me more stress than the illness. I plan to call Humana today. Also called yesterday afternoon and told me I have to go to this one general surgeon.I looked him up and he has a malpractice suit for causing a 65 yo woman's death due to cutting her artery while installing a port.

hi BarbarianBHAM, I HAVE SEEN MY DOCTOR I DONT FEELLIKE IM SAD JUST EMOTIONALBUT I HAVE TO TUCK IT IN BECAUSE EVERYONE THINKS IM SO STRONG AND DON'T WANT TO HERE IT. I WENT TO ME ONC. YESTERDAY I WILL BE TRYING ARIMIDEX, AND HAVE TO GET A BONE SCAN DONE. HE SAID THAT HE DON'T KNOW WHY I AM EXPERIENCING THIS PAIN. SUNDAY WAS THE FIRST TIME SINCE I COMPLETED CHEMO THAT I HAVE ASKED MY CHURCH TO PRAY FOR ME. I AM GOING TO LEARN HOW TOLET GO ON THIS ONE. I START TAKING THE NEW MEDS ON THE 19TH.

I too had my GIST surgery in February 2013. How are you doing? Still in treatment?

Thanks for your help. I finally spoke to a kind compassionate person at my doctors office. She handles the referrals and said she totally understands because she had gone thru a similar situation. She is sending my referral to a 5 star doctor and said she would see that I get an appointment sometime next week

Yeah right- not pushy. My doctor told me that I was in excellent health, but I was selfish, and not thinking of my 100% disabled vet son. What would happen to him if I had a stroke? I was having fun hiking and climbing, just a selfish mother that doesn't think of her son. Stats showed that I'd have a stroke in 10 years.

I found out what would have happened, My son hung onto a wall, while I had my arm over his shoulder, and tears came from my eyes on each step. He'd stand with his back to me, while I used the toilet. He pulled me up, and I hung onto to him and we hobbled back to the couch. We'd go to the bathroom like that. He'd turn his back and lean on the sink to keep from falling over. I'd undress. Wrap myself in a beach towel. He'd lean on the wall and try to hold me while I got in the tub. He left, I took the towel off, and filled my tub with water. When I was done bathing, I drained the water out, covered myself with the towel, and he came in, He'd stretch out his arm, and I held on until he pulled me up to the edge of the bath tub. He left, I sat on that. Dried myself, put on the clean undies he got me, a clean nighty, Then he came in and we made our way back to the couch, where I fell asleep from exhaustion. I fell a lot. I couldn't feel my feet-like my whole legs were asleep. I wouldn't have been able to eat, wash dishes. My son can drive short distances, he drove me to doctors and physical therapy, got me into a wheelchair.

I should have told him that I was trusting in God. I wish that I had trusted God and Jesus Christ instead of a doctor trying to fix something that wasn't wrong.

Hi Barbara - just saw your response on another thread about being stage IV and wanting your doc to tell you the odds. I'm stage IV too and really appreciate my GYN surgeon telling me all the stats are old and not to pay any attention to them. I looked online anyway (who does what they're told anyway??) and he was right. So I decided that even if my odds of surviving 5 years WERE only 11%, I was going to be in that 11% -- after all, someone had to be, right? Treatment protocols have come a long way, even in the last few years and new methods are being developed every day.

Just a note: my cancer is completely different than yours, but we stage IV survivors have to stick together. The good news: My scans have been cancer-free since January 2014. I've been through the chemo - surgery - chemo circuit. I'm currently undergoing maintenance chemo to kill any residual killer cells but I feel great for the most part. You can do it too.

Hugs!

Hi; How are you? Hope you are on the road to well. In a post a few months back, which I just reread because of a new answer, you stated that radiation was relatively easy. I wish you will consider adding the phrase "for me" to such statements. It isn't the same for everyone, especially depending upon the amount of radiation sessions and the area of the body which is being burned. Thanx and best wishes.

NOBODY IS IMMUNE FROM CANCER.
BUT.....If you study different Societies that are plant eaters they have WAY less Cancer, Diabetes or Heart and Vascular Problems. SO...One so called expert succumbing to the disease shouldn't stop you from doing all you can to make yourself healthier. In the book THE CHINA STUDY which was done by a PHD in Nutrition the meat/cancer and simple carbs and cancer is overwhelming. You can poo poo it if you want and that's ok but I think the odds are better to maybe not cure the cancer or even reverse it....BUT maybe to stop it in it's tracks or slow it down is ok too. Also...Chemo and Radiation DON'T help in that area and as a matter of fact it makes it worse.
JUST MY Opinion......Sometimes we don't want to do something that is Very Hard ( and it is very hard and I struggle with it everyday ) and find a Reason NOT to do it....Lots of smokers keep smoking because they see research that not all smokers get lung cancers and non smokers can get it....but the odds are not in their favor.
SO...don't say there is nothing wrong with a FOOD SUPPLY that is making millions of Americana sick...everybody I know is on some kind of medicine and that includes lots of kids...
I wish you all the luck and am only giving my Opinion and some common sense...

Call it what you like but when I worked for Hospice it was done. They don't call it that but when the end is coming they up the Morphine Drops under the tongue and give it every hour whether they are awake or ask for pain relief. It is a God Send to all the Family members I was around and it is done.

Barbara,
A week after surgery I was walking around the house without any significant pain, but a week ago, I began to have stabbing pains at the incision above my stomach and directly behind in my back. I've had a CT scan and they found nothing specific. I've been given pain medicine at week 3 after surgery and told to wait it out. Were you still in pain this long after surgery.

2nd question: Despite the fact that I have a biopsy report, they still haven't said whether the tumor is benign or malignant. The surgeon said the oncologist would determine this at my appointment on Wednesday. Is this what happened with you?

Hi Barbara,
Thanks for your response. His tumor is on the head of the pancreas and is wrapped around a main vein, that's why they are going to start the chemo, to try to shrink it away from that vein so they can go through with the whipple surgery. Hopefully the cancer docs can get his pain under better control soon.

Barbara,
Thank you so much for your response. My surgeon did not tell me if it is malignant or not. He said the oncologist would decide. I think that is so strange.
Thank you for the information on Gleevec. I will definitely take it as soon as it is prescribed. I pray that the new tumors will shrink quickly!

People are so very different. I read your heartfelt post including how you loved it when your oncologist said " "just trust me," I searched through near a dozen oncologists before I found one who would go beyond that and explain to me what & why he wanted to do this and that and actually include me into medical decisions.

Vive la difference!

Hi; I just wanted to congratulate you on your ability to read rather than to assume. :-) So many folks make assumptions. The nuclear disaster in Japan is A-OK. We aren't at all being affected by industry waste and poor habits and such.

I'm so sorry for your diagnosis. I wonder if you wouldn't mind doing some reading up on a food called "natto". It is Asian and a fermented food made from soy. I'd suggest you buy it organically and I can, if you decide it is for you, show you how to make it. The reason I mention it is that it has properties which dissolve blood clots.

It tastes (and looks) horrid but I slather it with mustard and chew.
It also contains vitamin B12. There are peer reviewed studies on it.

I was clearly outraged. I was born without a tact gene. It is comforting to know that there are others, if not like me, than, at least, in some agreement with me.

Respectfully yours :-) with full recovery wishes for the new year.

Hi BarbarainBham,
NED means no evidence of disease. They don't use the term remission anymore because cancer is so sneaky sometimes, so NED is the current term for cancer that is not active or that has disappeared...and hopefully gone forever! Take care!