Hi,
I am so relieved that my CA125 is still at 10. My pelvic exam went well too. I'm feeling more secure with this news and am ready to see my psychologist tomorrow. It's weird, I still feel depressed, and tired, but less heavy than before. This is the life of being NED (no evidence of disease). You live in blocks of time, until the next test.
So for now I will relish the joy of this good news. Have a beautiful day.
God Bless and Merry Christmas
CDC Symptom Diary Card
Thursday, December 16, 2010
Wednesday, December 15, 2010
The holidays
Merry Christmas everyone. This is the time of year for joy, love, forgiveness and peace. This Christmas season is so different from last year, and I'm glad. I get to enjoy shopping. I also get to reflect more on God's blessings. My online ovarian cancer group lost another sister today, so sad. The grace is that she is at peace, and no longer in pain.
Everyday we lose a dear sister, it's just so difficult to understand sometimes. I feel a thousand emotions all the time.
For me, I am really wanting to make the most of it. I'm putting more thought into my little gifts and really really praying that everyone just has fun. I want to hear more laughter than ever before. I am so lucky that I have such an amazing family. By the way, I was happy to send Christmas cards to my surgeon, oncologist and favorite chemo nurse. I didn't get to do that last year, I was too out of it, really. If you know someone on Chemo, offer to help them with cards and thank yous.........it will really help them.
I have four doctors appointments in the next 5 day run. I will find out tomorrow the results of my latest CA125. I will also see my psychologist on Friday for the first time. Monday I get my hearing checked and have another appointment with vocational rehab. I'm very fortunate to have these opportunities.
I finally got my new glasses, which I really needed. I couldn't read a book without a magnifying glass....sigh.
I'll be posting more as we get closer to Christmas and fill you in on the results of my appointments.
My main message today is that we only have a few days left before we celebrate the birth of our Lord Jesus Christ. Everyone in the world needs to have a chance to smile and feel true love. Jesus does love us all, and allow Him to comfort you during this time of great celebration.
God's Blessings to all!
Everyday we lose a dear sister, it's just so difficult to understand sometimes. I feel a thousand emotions all the time.
For me, I am really wanting to make the most of it. I'm putting more thought into my little gifts and really really praying that everyone just has fun. I want to hear more laughter than ever before. I am so lucky that I have such an amazing family. By the way, I was happy to send Christmas cards to my surgeon, oncologist and favorite chemo nurse. I didn't get to do that last year, I was too out of it, really. If you know someone on Chemo, offer to help them with cards and thank yous.........it will really help them.
I have four doctors appointments in the next 5 day run. I will find out tomorrow the results of my latest CA125. I will also see my psychologist on Friday for the first time. Monday I get my hearing checked and have another appointment with vocational rehab. I'm very fortunate to have these opportunities.
I finally got my new glasses, which I really needed. I couldn't read a book without a magnifying glass....sigh.
I'll be posting more as we get closer to Christmas and fill you in on the results of my appointments.
My main message today is that we only have a few days left before we celebrate the birth of our Lord Jesus Christ. Everyone in the world needs to have a chance to smile and feel true love. Jesus does love us all, and allow Him to comfort you during this time of great celebration.
God's Blessings to all!
Saturday, December 11, 2010
Doctors can be real #1 idiots
I belong to an online support group for people effected by ovarian cancer. Members consist of patients, caregivers, incognito health professionals, friends, spouses, family etc. Most of the members are female patients. Its fairly common that at some point you learn that many women on the site mention that their ovarian cancer was completely missed altogether or just very difficult to diagnose. I have a new friend who had the worst gynecologist ever it seems.
Doc is a friend of her husband, and I think that because of that, he didn't show this woman the respect she deserved. She had been going back and forth and back and forth to him, literally telling him that her symptoms sounded like ovarian cancer and he refused to do a CA125 blood test.
He kept telling her it was menapause, or it was fibroids, or it was this or that or whatever. He did the same to her that my gyno did to me. He said she was too young to have ovarian cancer and laughed it off.
I was fuming mad when I had read it, and wrote back a little about myself and our common experiences. She "friended" me and we e-mailed a little more.
MY FRUSTRATION IS THAT IF A WOMAN SAYS TO HER GYNOCOLOGIST OR PCP THAT SHE WANTS A CA125, AND SHE HAS SOME SIGNS OF OVARIAN CANCER, WHO IS THIS DOC TO DENY THE TEST?????????????? WHO IS HE/SHE TO PLAY GOD?????????
If I would have know the symptoms of ovarian cancer before I was diagnosed, I would have paid for the blood test myself, screw my doctor! I'm totally serious. Every woman should have the right to have this test. I KNOW THE CA125 IS NOT TOTALLY RELIABLE, BUT IF YOU HAVE OTHER SYMPTOMS, THE TEST SHOULD BE DONE, PERIOD.
This could literally save a life! Do they teach medical students about ovarian cancer? Have they just given up on us? Why are they so complacent to just let it get to stage IIIC? My friends doctor kept telling her it was pointless anyway because if they found it later it would be too late anyway!
What an ass.
I try not to use profanity, but really. She could have had early stage ovarian cancer treated and not live her remaining life in fear. Instead she was treated as an advanced stage patient, and even being NED/remission, her chances of recurrence are incredibly high. So are mine. We think about it all the time.
I don't want to live the rest of my life worrying about recurrence, and I am getting help in this area. I want to be happy. I want to be joyous and loving and happy and fun to be around.
At the same time I want to create a huge punching bag that has all the names of the docs who have negligently allowed women to advance into later stages of ovarian cancer, and give all those women a chance to pounce!
Thats the problem. Underneath all this healing simmers ever so slowly a burning anger that this could have been prevented. I have forgiven almost all of my doctors, except for two. I'm close to forgiving them.
I'm hoping to finish that by Christmas. The docs are just plain idiots, and really don't listen to their patients. We can't continue to allow this to keep happening. We just cant.
Be Love and God Bless
Doc is a friend of her husband, and I think that because of that, he didn't show this woman the respect she deserved. She had been going back and forth and back and forth to him, literally telling him that her symptoms sounded like ovarian cancer and he refused to do a CA125 blood test.
He kept telling her it was menapause, or it was fibroids, or it was this or that or whatever. He did the same to her that my gyno did to me. He said she was too young to have ovarian cancer and laughed it off.
I was fuming mad when I had read it, and wrote back a little about myself and our common experiences. She "friended" me and we e-mailed a little more.
MY FRUSTRATION IS THAT IF A WOMAN SAYS TO HER GYNOCOLOGIST OR PCP THAT SHE WANTS A CA125, AND SHE HAS SOME SIGNS OF OVARIAN CANCER, WHO IS THIS DOC TO DENY THE TEST?????????????? WHO IS HE/SHE TO PLAY GOD?????????
If I would have know the symptoms of ovarian cancer before I was diagnosed, I would have paid for the blood test myself, screw my doctor! I'm totally serious. Every woman should have the right to have this test. I KNOW THE CA125 IS NOT TOTALLY RELIABLE, BUT IF YOU HAVE OTHER SYMPTOMS, THE TEST SHOULD BE DONE, PERIOD.
This could literally save a life! Do they teach medical students about ovarian cancer? Have they just given up on us? Why are they so complacent to just let it get to stage IIIC? My friends doctor kept telling her it was pointless anyway because if they found it later it would be too late anyway!
What an ass.
I try not to use profanity, but really. She could have had early stage ovarian cancer treated and not live her remaining life in fear. Instead she was treated as an advanced stage patient, and even being NED/remission, her chances of recurrence are incredibly high. So are mine. We think about it all the time.
I don't want to live the rest of my life worrying about recurrence, and I am getting help in this area. I want to be happy. I want to be joyous and loving and happy and fun to be around.
At the same time I want to create a huge punching bag that has all the names of the docs who have negligently allowed women to advance into later stages of ovarian cancer, and give all those women a chance to pounce!
Thats the problem. Underneath all this healing simmers ever so slowly a burning anger that this could have been prevented. I have forgiven almost all of my doctors, except for two. I'm close to forgiving them.
I'm hoping to finish that by Christmas. The docs are just plain idiots, and really don't listen to their patients. We can't continue to allow this to keep happening. We just cant.
Be Love and God Bless
Thursday, December 09, 2010
ERT and my naturopath
Hello all,
I read one of the articles from the previous blog's link, about estrogen replacement therapy. Please take time to read. I am so happy that I discontinued my estradiol patch about a month or so ago. I just had this feeling inside that I needed to stop. Because I am also BRCA 1 mutation positive, eventually I may take Tamoxafen to help decrease the chances of breast cancer. You cannot take Tamoxafen while taking estrogen. Plus, according to the article, estrogen can increase the risk of recurrence and also increase the speed of destruction.
That's just plain bad news.
So I am having hot flashes every hour or so, and it's not so fun. The only upside is that the overall temperature is "cold" and I can just go outside for a minute and cool off. Hopefully this will pass sooner than later, but it's nothing compared to a recurrence. I'll deal, no biggie.
My ND (Naturpathic Doctor) is fantastic, he's just what I needed on my team right now. I think everyone should see him. Prior to seeing him, I had to complete a detailed questionnaire, as usual. But it asked really good questions about my habits, body and what was important to me. Wow.
In his office there were some awards. He sits looking out onto the water in Puget Sound, nice. The staff is all smiley and friendly. Perfect.
After answering 20 or 30 very specific questions about anything you can imagine, he wrote out a very simple plan to get my GI tract back in check. Yippie. I do have 4 new supplements that range from enzymes to multivitamins. I also must eat several cups of fruit ( cantaloupe or pears etc) per day. The fruit is for fiber. One of the supplements will help to grease my GI tract to help things move along more smoothly.
The most important thing was to increase my exercise. He insists that I move briskly for 20 minutes every day.................aaagh. He prefers that I walk, but any really fast moving that gets my heart pumping is what he wants. I didn't ask "why" because I know why. I need to flush out toxins and increase my endurance.
I have other issues to face but he just wants to deal with digestion for now. That is what I want to do. He affirmed that healthy absorption of nutrients can help improve my immune function, which would hopefully fend off disease.
Funny thing, he also wants me to over-chew my food. He said "chew your soup". This is because the salivary enzymes are a critical part of the digestion process. I've always been a slow eater, so no problem. I just need to be careful I don't look like a cow chewing her cud......ha ha.
I am to see him again in late January.
I don't want to invest all my hope in this area of my treatment, but it's so so so so so important to me that I do whatever I can do to help myself be healthy. I can control what I eat, how I eat, etc. I can't control my bone marrow production, you know what I mean?
AND.....being full of energy, feeling good, appearing healthy are all part of returning to being a productive member of the working population.
It just really gets me down that I'm not healthy sometimes, healthy people have no idea how lucky they are.
If I were healthy, I could do anything I wanted. I could climb rocks, I could be a waitress to earn extra money.............but being like I am, my options have narrowed. So I will do my best to see the glory and sunshine, because I do know I'm meant for something.
I also was able to go to church tonight for a mass to celebrate Virgin Mary. Last year I was not able to go. It felt so nice to be able to go to church.....................so nice.
Be Love and God Bless
I read one of the articles from the previous blog's link, about estrogen replacement therapy. Please take time to read. I am so happy that I discontinued my estradiol patch about a month or so ago. I just had this feeling inside that I needed to stop. Because I am also BRCA 1 mutation positive, eventually I may take Tamoxafen to help decrease the chances of breast cancer. You cannot take Tamoxafen while taking estrogen. Plus, according to the article, estrogen can increase the risk of recurrence and also increase the speed of destruction.
That's just plain bad news.
So I am having hot flashes every hour or so, and it's not so fun. The only upside is that the overall temperature is "cold" and I can just go outside for a minute and cool off. Hopefully this will pass sooner than later, but it's nothing compared to a recurrence. I'll deal, no biggie.
My ND (Naturpathic Doctor) is fantastic, he's just what I needed on my team right now. I think everyone should see him. Prior to seeing him, I had to complete a detailed questionnaire, as usual. But it asked really good questions about my habits, body and what was important to me. Wow.
In his office there were some awards. He sits looking out onto the water in Puget Sound, nice. The staff is all smiley and friendly. Perfect.
After answering 20 or 30 very specific questions about anything you can imagine, he wrote out a very simple plan to get my GI tract back in check. Yippie. I do have 4 new supplements that range from enzymes to multivitamins. I also must eat several cups of fruit ( cantaloupe or pears etc) per day. The fruit is for fiber. One of the supplements will help to grease my GI tract to help things move along more smoothly.
The most important thing was to increase my exercise. He insists that I move briskly for 20 minutes every day.................aaagh. He prefers that I walk, but any really fast moving that gets my heart pumping is what he wants. I didn't ask "why" because I know why. I need to flush out toxins and increase my endurance.
I have other issues to face but he just wants to deal with digestion for now. That is what I want to do. He affirmed that healthy absorption of nutrients can help improve my immune function, which would hopefully fend off disease.
Funny thing, he also wants me to over-chew my food. He said "chew your soup". This is because the salivary enzymes are a critical part of the digestion process. I've always been a slow eater, so no problem. I just need to be careful I don't look like a cow chewing her cud......ha ha.
I am to see him again in late January.
I don't want to invest all my hope in this area of my treatment, but it's so so so so so important to me that I do whatever I can do to help myself be healthy. I can control what I eat, how I eat, etc. I can't control my bone marrow production, you know what I mean?
AND.....being full of energy, feeling good, appearing healthy are all part of returning to being a productive member of the working population.
It just really gets me down that I'm not healthy sometimes, healthy people have no idea how lucky they are.
If I were healthy, I could do anything I wanted. I could climb rocks, I could be a waitress to earn extra money.............but being like I am, my options have narrowed. So I will do my best to see the glory and sunshine, because I do know I'm meant for something.
I also was able to go to church tonight for a mass to celebrate Virgin Mary. Last year I was not able to go. It felt so nice to be able to go to church.....................so nice.
Be Love and God Bless
Wednesday, December 08, 2010
http://myemail.constantcontact.com/In-The-Know-With-OCRF--Research-Report-2010.html?soid=1102150261756&aid=qjObaaPCPzk
Hello everyone. Here's a link to some of the latest research on ovarian cancer. Later I will blog about my wonderful trip to the naturopathic doctor.
Be well
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