Maggie

hopeful girl 1

Maggie,

Good luck with the new CA125 test, and the scans.

Just remember, my doc said sometimes scans too can be misleading after all of the surgery we have had.

And you were sick, so perhaps that was a factor in your CA125 spike.

I am sending positive and healing thoughts your way.

Cindy

maggie_wilson

cindy
thanks so much, cindy. right now they're still trying to schedule a ct/pet scan for me, so i doubt i'll have another ca 125 at this point. my doctor doesn't think having a cold really would make much of a difference. at my request, she is ordering megadoses of vit d, since i'm low, and there's evidence that it helps protect against certain cancers. so, we'll see. in the meantime, i just go about my daily life, celebrating chanukkah with my family this week, and partner and i going to commonweal, the cancer support institute in bolinas, california on monday for a week. very healing place. so, hopefully, will have the scans scheduled before the end of the year, or insurance won't pay for it. the jerks!

thanks again for your positive and healing thoughts my way. i appreciate them very much.

hope all is going well with you.
sisterhood, maggie

hopeful girl 1

maggie_wilson said:

cindy
thanks so much, cindy. right now they're still trying to schedule a ct/pet scan for me, so i doubt i'll have another ca 125 at this point. my doctor doesn't think having a cold really would make much of a difference. at my request, she is ordering megadoses of vit d, since i'm low, and there's evidence that it helps protect against certain cancers. so, we'll see. in the meantime, i just go about my daily life, celebrating chanukkah with my family this week, and partner and i going to commonweal, the cancer support institute in bolinas, california on monday for a week. very healing place. so, hopefully, will have the scans scheduled before the end of the year, or insurance won't pay for it. the jerks!

thanks again for your positive and healing thoughts my way. i appreciate them very much.

hope all is going well with you.
sisterhood, maggie

Maggie,

I think the retreat to commonweal will do a world of good-sounds great from your various postings, gourmet veggie meals, massages, ocean etc. It sounds just wonderful, and just the kind of peace and tranquility we all need to rest our minds. I hope they have some interesting information as well. We all look forward to hearing about it.

Sorry to hear the doc doesn't think another CA125 test is needed. If he ordered one, it might help ease your mind a bit. Well, I guess the scan will show if there is anything to be concerned about. Hopefully they can schedule for you before end of year as you mentioned. Perhaps this is just a little scare, and they won't find anything going on.
These tests are so anxiety ridden waiting on results aren't they? All part of our new normal.

You asked about me also. Well I am done with my initial treatment protocol for uterine 3C-it has been 4 weeks since my 6th chemo. The 6th chemo was rather hard on me and totally wiped out my bloodcounts and tired me out. I am still rather tired out, probably because my counts are still low and my body is having to make alot more platelets and white cells.
That must take a lot of the body's energies right?

I did come up a bit with the bloodtest on Monday, two days ago. They are sending me back for another bloodtest next week to monitor.

My WBC went up from 1.3 to 1.8
My neutrophils went up from 750 to 1,300
My platelets went up from 21,000 to 34,000 (so they are hoping the trend will continue upward)
My hemoglobin dropped form 10.6 to 10.3 (I had a hemoglobin transfusion on Nov 17th. Before the transfusion it was 8.5 and after the transfusion 11.2. I was told by one of the chemo nurses that not all of the cells are alive in the transfusion so for 2 weeks you will drop alittle bit). Good thing I had that done when I did.

So I am just resting, reading and renting movies etc. I was doing the recumbant bike 30 minutes a day, but decided to hold off on that until the platelets get passed 50,000. That was Susafina's advice to me as well.

In February I go for 3 month follow up with my radiation and chemo oncologists (chemo oncologist was also my surgeon) and they will do exam, CA125 and they may order a CT/pet scan.

Peace, healing and hugs,

Cindy

norma2

maggie_wilson said:

cindy
thanks so much, cindy. right now they're still trying to schedule a ct/pet scan for me, so i doubt i'll have another ca 125 at this point. my doctor doesn't think having a cold really would make much of a difference. at my request, she is ordering megadoses of vit d, since i'm low, and there's evidence that it helps protect against certain cancers. so, we'll see. in the meantime, i just go about my daily life, celebrating chanukkah with my family this week, and partner and i going to commonweal, the cancer support institute in bolinas, california on monday for a week. very healing place. so, hopefully, will have the scans scheduled before the end of the year, or insurance won't pay for it. the jerks!

thanks again for your positive and healing thoughts my way. i appreciate them very much.

hope all is going well with you.
sisterhood, maggie

Dear Maggie
I hope you have a wonderful retreat and revitalization in bolinas. Maybe a few games of cards...hahah just joking. Seriously, I do believe that our mental attitude plays a part in all of this experience. You know that. Don't have to tell you, honey. It is what you do for a living. Sometimes, though it is good to have it validated. Relax. Even though it is hard waiting for tests and test results. I am thinking of you and sending you the most positive of vibes. Some prayers too....and a big {{{huggggg}.

sisterhood,
Norma

maggie_wilson

norma2 said:

Dear Maggie
I hope you have a wonderful retreat and revitalization in bolinas. Maybe a few games of cards...hahah just joking. Seriously, I do believe that our mental attitude plays a part in all of this experience. You know that. Don't have to tell you, honey. It is what you do for a living. Sometimes, though it is good to have it validated. Relax. Even though it is hard waiting for tests and test results. I am thinking of you and sending you the most positive of vibes. Some prayers too....and a big {{{huggggg}.

sisterhood,
Norma

norma
thank you so much for your kind words and positive vibes you've sent my way; they do really help. i'm still waiting to have my ct/pet scan scheduled, then i can know it's going to be done, and i can go to bolinas without worrying about that. am trying to relax, and know that's what they'll be concentrating on at commonweal, so i'll get plenty of yoga, meditation, imagery, gourmet veg food, massages, and group support, not too shabby. then i can come home and try not to worry. don't think i haven't thought of a little poker there, but unfortunately, it is definitely not on the agenda. still......

hope all is well with you, norma.

hugs and sisterhood,
maggie

maggie_wilson

hopeful girl 1 said:

Maggie,

I think the retreat to commonweal will do a world of good-sounds great from your various postings, gourmet veggie meals, massages, ocean etc. It sounds just wonderful, and just the kind of peace and tranquility we all need to rest our minds. I hope they have some interesting information as well. We all look forward to hearing about it.

Sorry to hear the doc doesn't think another CA125 test is needed. If he ordered one, it might help ease your mind a bit. Well, I guess the scan will show if there is anything to be concerned about. Hopefully they can schedule for you before end of year as you mentioned. Perhaps this is just a little scare, and they won't find anything going on.
These tests are so anxiety ridden waiting on results aren't they? All part of our new normal.

You asked about me also. Well I am done with my initial treatment protocol for uterine 3C-it has been 4 weeks since my 6th chemo. The 6th chemo was rather hard on me and totally wiped out my bloodcounts and tired me out. I am still rather tired out, probably because my counts are still low and my body is having to make alot more platelets and white cells.
That must take a lot of the body's energies right?

I did come up a bit with the bloodtest on Monday, two days ago. They are sending me back for another bloodtest next week to monitor.

My WBC went up from 1.3 to 1.8
My neutrophils went up from 750 to 1,300
My platelets went up from 21,000 to 34,000 (so they are hoping the trend will continue upward)
My hemoglobin dropped form 10.6 to 10.3 (I had a hemoglobin transfusion on Nov 17th. Before the transfusion it was 8.5 and after the transfusion 11.2. I was told by one of the chemo nurses that not all of the cells are alive in the transfusion so for 2 weeks you will drop alittle bit). Good thing I had that done when I did.

So I am just resting, reading and renting movies etc. I was doing the recumbant bike 30 minutes a day, but decided to hold off on that until the platelets get passed 50,000. That was Susafina's advice to me as well.

In February I go for 3 month follow up with my radiation and chemo oncologists (chemo oncologist was also my surgeon) and they will do exam, CA125 and they may order a CT/pet scan.

Peace, healing and hugs,

Cindy

cindy
thank you for your encouraging message. sounds like mostly things are pretty good, except for the fatigue. you're doing just what you should be doing: relaxing, reading, watching movies. hope everything that should go up, does, and everything that should go down does that too. don't even think about february at this point, just enjoy the rest you get to have now. fyi, my doctor, at my request, just gave me a prescription for vit d, 50,000 once a week for 4 weeks, and more if i need it to get my vit d level up to where it should be when you have/had cqncer: 60-75 according to my brilliant researcher. if you haven't already done so, talk to your doctor about having your vit d level checked, and if it's low, which often it is, ask him about vit d supplements. apparently there is some good evidence, according to my doctor who keeps up on the latest in cancer treatment, that it can protect against certain cancers.

sisterhood and hugs,
maggie

bots

maggie_wilson said:

cindy
thanks so much, cindy. right now they're still trying to schedule a ct/pet scan for me, so i doubt i'll have another ca 125 at this point. my doctor doesn't think having a cold really would make much of a difference. at my request, she is ordering megadoses of vit d, since i'm low, and there's evidence that it helps protect against certain cancers. so, we'll see. in the meantime, i just go about my daily life, celebrating chanukkah with my family this week, and partner and i going to commonweal, the cancer support institute in bolinas, california on monday for a week. very healing place. so, hopefully, will have the scans scheduled before the end of the year, or insurance won't pay for it. the jerks!

thanks again for your positive and healing thoughts my way. i appreciate them very much.

hope all is going well with you.
sisterhood, maggie

Happy Chanukkah, Maggie
Happy Chanukkah, Maggie. I hope you have a wonderful, relaxing time in Bolinas--one of my very favorite places. I think of you so often--am keep fingers, toes,and eyes crossed for you. Let's have coffee when you get back. My email is lwarnold@comcast.net.

Lori (Bots)

maggie_wilson

bots said:

Happy Chanukkah, Maggie
Happy Chanukkah, Maggie. I hope you have a wonderful, relaxing time in Bolinas--one of my very favorite places. I think of you so often--am keep fingers, toes,and eyes crossed for you. Let's have coffee when you get back. My email is lwarnold@comcast.net.

Lori (Bots)

lori
i think of you as well, since my office and massage therapist are right around the block from you. it would be good to get together some time after i return from bolinas. i do have a schedule now for my ct/pet, towards middle of december, then i do have to wait 10 days for results since my doctor is on vacation. it's actually ok, gives me time to settle back into my life after bolinas, after pet, though i'll be anxious, gives us time to prepare for the results. frankly. i do think i have a recurrence; my hope is it's not extensive, so that i can do hormonal therapy. i always want to try the least invasive treatment first. then, if hormonal therapy isn't appropriate, then probably back to chemo, tho' frankly. doxil scares me. i know people have had differing reactions to it, but it sounds like a huge headache, hand and feet ache, etc. well, one step at a time.

thanks for your chanukkah wishes, lori. do you celebrate chanukkah? had two small family gatherings at our house wednesday and thursday night, and we're done. do like xmas, too, so may do something for that, but we, fortunately, won't be hosting it.

sisterhood,
maggie

Songflower

maggie_wilson said:

lori
i think of you as well, since my office and massage therapist are right around the block from you. it would be good to get together some time after i return from bolinas. i do have a schedule now for my ct/pet, towards middle of december, then i do have to wait 10 days for results since my doctor is on vacation. it's actually ok, gives me time to settle back into my life after bolinas, after pet, though i'll be anxious, gives us time to prepare for the results. frankly. i do think i have a recurrence; my hope is it's not extensive, so that i can do hormonal therapy. i always want to try the least invasive treatment first. then, if hormonal therapy isn't appropriate, then probably back to chemo, tho' frankly. doxil scares me. i know people have had differing reactions to it, but it sounds like a huge headache, hand and feet ache, etc. well, one step at a time.

thanks for your chanukkah wishes, lori. do you celebrate chanukkah? had two small family gatherings at our house wednesday and thursday night, and we're done. do like xmas, too, so may do something for that, but we, fortunately, won't be hosting it.

sisterhood,
maggie

Doxil
Maggie,

I found doxil the easiest to take. We don't write in when we're fine just when the hands and feet bother us. But they do heal.

Pack me in your bag for your week of healing!

Diane

bots

maggie_wilson said:

lori
i think of you as well, since my office and massage therapist are right around the block from you. it would be good to get together some time after i return from bolinas. i do have a schedule now for my ct/pet, towards middle of december, then i do have to wait 10 days for results since my doctor is on vacation. it's actually ok, gives me time to settle back into my life after bolinas, after pet, though i'll be anxious, gives us time to prepare for the results. frankly. i do think i have a recurrence; my hope is it's not extensive, so that i can do hormonal therapy. i always want to try the least invasive treatment first. then, if hormonal therapy isn't appropriate, then probably back to chemo, tho' frankly. doxil scares me. i know people have had differing reactions to it, but it sounds like a huge headache, hand and feet ache, etc. well, one step at a time.

thanks for your chanukkah wishes, lori. do you celebrate chanukkah? had two small family gatherings at our house wednesday and thursday night, and we're done. do like xmas, too, so may do something for that, but we, fortunately, won't be hosting it.

sisterhood,
maggie

Maggie
I can't imagine what you must be going through right now. I panic at every little cough or pain and statistically, I have pretty good odds. I really hope that if you are right, it is small and easily treatable. I'm with you on the least invasive treatment.

My oldest son converted to Judaism about 12 years ago. He then met a wonderful Jewish woman and, fortunately for us, married her. They have just moved back here from Phoenix with my two grandchildren, so yes indeed, we do celebrate Chanukkah. We also celebrate Christmas with my other two when they are here and with my 95 year old mother. (She is at Berkeley Pines--about a block from us.) On the 27th we are going to The Woodlands, Texas because my son and daughter-in-law who are the parents of the baby in the picture will be there visiting my daughter-in-law's family. They have a huge family, so we are waiting until many of her relatives leave before we visit. We always have a good time with her parents. We are taking my granddaughter (age 9) who lives here with us so she can meet her new cousin. I think I got carried away here. Such a long answer to your question.

Your Bolinas retreat sounds wonderful. I so hope you come back relaxed and invigoraged. Please let me know when you get home so we can finally meet for coffee.

My best,
Lori

maggie_wilson

bots said:

Maggie
I can't imagine what you must be going through right now. I panic at every little cough or pain and statistically, I have pretty good odds. I really hope that if you are right, it is small and easily treatable. I'm with you on the least invasive treatment.

My oldest son converted to Judaism about 12 years ago. He then met a wonderful Jewish woman and, fortunately for us, married her. They have just moved back here from Phoenix with my two grandchildren, so yes indeed, we do celebrate Chanukkah. We also celebrate Christmas with my other two when they are here and with my 95 year old mother. (She is at Berkeley Pines--about a block from us.) On the 27th we are going to The Woodlands, Texas because my son and daughter-in-law who are the parents of the baby in the picture will be there visiting my daughter-in-law's family. They have a huge family, so we are waiting until many of her relatives leave before we visit. We always have a good time with her parents. We are taking my granddaughter (age 9) who lives here with us so she can meet her new cousin. I think I got carried away here. Such a long answer to your question.

Your Bolinas retreat sounds wonderful. I so hope you come back relaxed and invigoraged. Please let me know when you get home so we can finally meet for coffee.

My best,
Lori

lori
you would be surprised at what one can live with if one has to. i'm actually doing pretty well most of the time, and feeling quite good, which helps. i'm not feeling hopeless, though when it comes time to see doctor for ct/pet scan results i know i'll be very anxious. actually, i am glad to be alive, and to have had over a year of no treatment, almost like normal. i don't worry about every little twinge anymore, ever since i kept pointing out new pains to my doctor, who finally said she was "unimpressed" with my pains, which really made me laugh, i.e., she didn't take them seriously. and she was right, none of my pains or other symptoms were ever cancer: nausea was lactose intolerance, newly acquired, cancer on vaginal cuff, then uti, was actually normal post menopausal irritated urethra which a little natural yam progesterone cleared up. so, don't sweat the pains. i'm relatively old, 69 in january, and have lived, until 09, a long, extraordinarily healthy life. so, who knows how long is left, but i imagine i'll be around for awhile yet. it's the chemo i hate!

thanks for the long message re: your family; i really enjoyed reading it. we, too, have a pretty much mini u.n. here. my granddaughter is half ecuodorian, quarter jewish, quarter irish/english. my son married an african woman and she had a 7 year old daughter, and now they have a 20 month son, my grandson, shiloh, who is a show stopper. actually, all three are. my mother died last year at 96, peacefully of pneumonia. i don't feel i've fully grieved her death because i was just released from a week in the hospital after some stupid blockage after my first chemo. it cleared right up with an ng tube, but they kept me because of my low blood counts. never had to miss a chemo, though. though feel like so much of me missed my mother's death. i hope to be able to use commonweal to help me grieve--not my strong suit.

yes, will get in touch with you when we return from bolinas. just got the names of two shamans who apparently helped heal a very, very sick woman with cancer. think i'll try them out at some point, can't hurt, and i like that kind of thing. can only hurt my pocket book, and right now i can deal with that.

so, happy chanukkah to you and yours, as well, lori.

sisterhood,
maggie

bots

maggie_wilson said:

lori
you would be surprised at what one can live with if one has to. i'm actually doing pretty well most of the time, and feeling quite good, which helps. i'm not feeling hopeless, though when it comes time to see doctor for ct/pet scan results i know i'll be very anxious. actually, i am glad to be alive, and to have had over a year of no treatment, almost like normal. i don't worry about every little twinge anymore, ever since i kept pointing out new pains to my doctor, who finally said she was "unimpressed" with my pains, which really made me laugh, i.e., she didn't take them seriously. and she was right, none of my pains or other symptoms were ever cancer: nausea was lactose intolerance, newly acquired, cancer on vaginal cuff, then uti, was actually normal post menopausal irritated urethra which a little natural yam progesterone cleared up. so, don't sweat the pains. i'm relatively old, 69 in january, and have lived, until 09, a long, extraordinarily healthy life. so, who knows how long is left, but i imagine i'll be around for awhile yet. it's the chemo i hate!

thanks for the long message re: your family; i really enjoyed reading it. we, too, have a pretty much mini u.n. here. my granddaughter is half ecuodorian, quarter jewish, quarter irish/english. my son married an african woman and she had a 7 year old daughter, and now they have a 20 month son, my grandson, shiloh, who is a show stopper. actually, all three are. my mother died last year at 96, peacefully of pneumonia. i don't feel i've fully grieved her death because i was just released from a week in the hospital after some stupid blockage after my first chemo. it cleared right up with an ng tube, but they kept me because of my low blood counts. never had to miss a chemo, though. though feel like so much of me missed my mother's death. i hope to be able to use commonweal to help me grieve--not my strong suit.

yes, will get in touch with you when we return from bolinas. just got the names of two shamans who apparently helped heal a very, very sick woman with cancer. think i'll try them out at some point, can't hurt, and i like that kind of thing. can only hurt my pocket book, and right now i can deal with that.

so, happy chanukkah to you and yours, as well, lori.

sisterhood,
maggie

Shamans
That is a really intriguing idea, Maggie. I am anxious to hear more about it.

Hugs,
Lori