Dis Breast Cancer Survivors Part IV - GAGWTA

[MIGrandma]

Wow! This thread has been really quiet.

MIGrandma, I also missed your post. I hope things are going well for your daughter. Our prayers are with her!

Hope everyone else is doing well. Things have been hectic here. Kendall is still trying to find an answer. They are back to thinking it is MS. They've definitely ruled out lupus. She saw an orthopedic surgeon who said that there was nothing associated with her spine that would be causing her problems. It is definitely neurological. It is difficult because she has no lesions on her brain or spine. The orthopedic surgeon told us that, although most people with MS have lesions, that does not rule it out.

The next step is a spinal tap. She has another appointment with the neurologist on April 25th. He may send her to Mayo Clinic in Jacksonville.

It is so hard watching her deteriorate. She is now walking with a cane. I pray constantly that they figure this out soon and that they come up with a treatment plan that will help her.

Thinking of you all!

I tried quoting your post with the other 2, but it would only quote 2 for some reason. But thank you so much for your kind words and prayers, I appreciate it so much.

I'm not sure who Kendall is, your daughter? But at any rate, my thoughts are with her and your family and I will send up a prayer as well. So hard to watch family, or good friends too, struggle.

 

[Pea-n-Me]

Sounds like things are going as well as they possibly could, @MIGrandma! That's great news! Keep us updated. Sending prayers for healing!

 

[MIGrandma]

Update on our DD: The rest of her tests finally came back, and when the nurse talked to our DSIL she said that they shouldn't be surprised that the oncologist will recommend chemo. She goes the 23rd to see the oncologist (they asked me to go with them), and they have already scheduled her surgery for May 8th to have the port put in for the chemo. The nurse told DSIL that the chemo would be 4 days the first week, then one day per week for the next 11 weeks. Then she will have radiation following the chemo. So, it looks like it's going to be a l-o-n-g and difficult summer for DD.

The nurse also said she has never seen anyone NOT lose their hair, so DD is already preparing for that and got her hair cut short (it was fairly short before, but now much shorter) AND had it dyed DARK PURPLE!! She is trying to stay positive, and said she's not going to have her hair much longer so why not have some fun with it?!

She hasn't told anyone at work except her boss and the assistant managers (she is the personnel manager at our local Walmart, has worked there 18 years) but it's going to come out once she loses her hair and she's not looking forward to everyone knocking on her door asking how she's doing. She's pretty much a private person and wishes she could keep it that way. She doesn't want to wear a wig though, but has found some cute/pretty scarves.

So, please, if you could, send up a prayer or if you're not a believer good thoughts are most appreciated too. Thanks everyone!! It's so hard to see our DD go through this, but she has a supportive family in her husband and children (10 and 14) and on both sides of the family so I know she will get through this, and come out even stronger on the other side.

 

[Pea-n-Me]

Update on our DD: The rest of her tests finally came back, and when the nurse talked to our DSIL she said that they shouldn't be surprised that the oncologist will recommend chemo. She goes the 23rd to see the oncologist (they asked me to go with them), and they have already scheduled her surgery for May 8th to have the port put in for the chemo. The nurse told DSIL that the chemo would be 4 days the first week, then one day per week for the next 11 weeks. Then she will have radiation following the chemo. So, it looks like it's going to be a l-o-n-g and difficult summer for DD.

The nurse also said she has never seen anyone NOT lose their hair, so DD is already preparing for that and got her hair cut short (it was fairly short before, but now much shorter) AND had it dyed DARK PURPLE!! She is trying to stay positive, and said she's not going to have her hair much longer so why not have some fun with it?!

She hasn't told anyone at work except her boss and the assistant managers (she is the personnel manager at our local Walmart, has worked there 18 years) but it's going to come out once she loses her hair and she's not looking forward to everyone knocking on her door asking how she's doing. She's pretty much a private person and wishes she could keep it that way. She doesn't want to wear a wig though, but has found some cute/pretty scarves.

So, please, if you could, send up a prayer or if you're not a believer good thoughts are most appreciated too. Thanks everyone!! It's so hard to see our DD go through this, but she has a supportive family in her husband and children (10 and 14) and on both sides of the family so I know she will get through this, and come out even stronger on the other side.

Definitely keeping her in my prayers. She will get through this! One of the hardest parts of this for a lot of people is losing their hair. Because, as you said, otherwise, nobody might know. I did wear a wig but I was able to find a super comfortable one that never came off, even when I went sledding w the kids and such. (And mine was red!) So you just have to shop around to try to find one that's comfy and looks to her liking. IF she decides to go that route. Some are so nice that many don't even realize it's a wig. Chemo makes you fatigued and feeling a little off, which may be an issue for work, but lots of bosses try to be helpful when they know someone is going through chemo. Let us know how she's doing!

 

[MIGrandma]

Definitely keeping her in my prayers. She will get through this! One of the hardest parts of this for a lot of people is losing their hair. Because, as you said, otherwise, nobody might know. I did wear a wig but I was able to find a super comfortable one that never came off, even when I went sledding w the kids and such. (And mine was red!) So you just have to shop around to try to find one that's comfy and looks to her liking. IF she decides to go that route. Some are so nice that many don't even realize it's a wig. Chemo makes you fatigued and feeling a little off, which may be an issue for work, but lots of bosses try to be helpful when they know someone is going through chemo. Let us know how she's doing!

Thank you so much. If it were me I would want a wig, really don’t know why she doesn’t want one. Maybe I will just ask her. I wouldn’t push her for a wig, just would like to know why she is so adamant about not wanting one.

As for work, she has some kind of intermittent leave of absence for a year (she had to file papers for it) so she can take time off when she needs it so that will help in that department. Plus she has a terrific boss.

 

[Pea-n-Me]

Thank you so much. If it were me I would want a wig, really don’t know why she doesn’t want one. Maybe I will just ask her. I wouldn’t push her for a wig, just would like to know why she is so adamant about not wanting one.

As for work, she has some kind of intermittent leave of absence for a year (she had to file papers for it) so she can take time off when she needs it so that will help in that department. Plus she has a terrific boss.

That's great, probably FMLA. As for wigs, for some reason I was stuck on having a "real hair" wig. When I tried them on I absolutely hated them, they didn't fit well and I remember just crying. But then I went to a different place and I saw this great little wig that was sporty and I tried it on and I couldn't believe how comfortable it felt on my head. Insurance covers two (at least they used to) so I got a second but I really only wore the first one. When I came home I took it off and put a soft cover on my head. They used to sell nice soft covers at our local cancer hospital but I was in there recently and I didn't see them anymore. I'm sure there are some still around, though.

 

[fortwildernessishome]

Update on our DD: The rest of her tests finally came back, and when the nurse talked to our DSIL she said that they shouldn't be surprised that the oncologist will recommend chemo. She goes the 23rd to see the oncologist (they asked me to go with them), and they have already scheduled her surgery for May 8th to have the port put in for the chemo. The nurse told DSIL that the chemo would be 4 days the first week, then one day per week for the next 11 weeks. Then she will have radiation following the chemo. So, it looks like it's going to be a l-o-n-g and difficult summer for DD.

The nurse also said she has never seen anyone NOT lose their hair, so DD is already preparing for that and got her hair cut short (it was fairly short before, but now much shorter) AND had it dyed DARK PURPLE!! She is trying to stay positive, and said she's not going to have her hair much longer so why not have some fun with it?!

She hasn't told anyone at work except her boss and the assistant managers (she is the personnel manager at our local Walmart, has worked there 18 years) but it's going to come out once she loses her hair and she's not looking forward to everyone knocking on her door asking how she's doing. She's pretty much a private person and wishes she could keep it that way. She doesn't want to wear a wig though, but has found some cute/pretty scarves.

So, please, if you could, send up a prayer or if you're not a believer good thoughts are most appreciated too. Thanks everyone!! It's so hard to see our DD go through this, but she has a supportive family in her husband and children (10 and 14) and on both sides of the family so I know she will get through this, and come out even stronger on the other side.

Definitely keeping her in my prayers. She will get through this! One of the hardest parts of this for a lot of people is losing their hair. Because, as you said, otherwise, nobody might know. I did wear a wig but I was able to find a super comfortable one that never came off, even when I went sledding w the kids and such. (And mine was red!) So you just have to shop around to try to find one that's comfy and looks to her liking. IF she decides to go that route. Some are so nice that many don't even realize it's a wig. Chemo makes you fatigued and feeling a little off, which may be an issue for work, but lots of bosses try to be helpful when they know someone is going through chemo. Let us know how she's doing!

I don't post here often. I didn't have breast cancer, but ovarian and uterine. I was diagnosed with both of them at the same time.

Sending prayers for your daughter MIGrandma. Cancer is so hard to go through and especially hard when you have young children at home. She is so lucky to have you and a supportive family. My Mom was a big help to me too!


I was just going to chime in on the wig. Obviously, if she doesn't want to do a wig and wants to go scarves that great, she should do whatever makes her the most comfortable. I was like Pea-n-Me and got two wigs, also paid for by insurance. Mine was very comfortable and held up great. My youngest son was on a ski team during that time and I had no problems standing at the bottom of the mountain with the wind gusting. My wig was great in the wind, rain, whatever.

What I liked BEST about my wig was that no one knew it was a wig. So unless I told someone that I was going through treatment, they did no know. A prime example of this was that I wore my wig throughout my sons high school baseball season. My friends knew about my cancer and the wig, because I told them, but the other Moms had no clue. Fast forward to the end of the high school season and the start of Legion baseball in the summer. Once my hair was about an inch long, I stopped wearing the wig. At that time, I shared with some of the other Moms about my cancer. They were totally shocked that we had gone through 3 months of high school ball, sitting right next to each other and they had no clue that I was sick or wearing a wig. I only mention all of this, because you mentioned that your daughter is very private and isn't looking forward to her co-workers knocking on her door once they notice that she has lost her hair.


I wore my wig all of the time except when I went to bed, then I had a soft hat to put on. Whatever your daughter decides will be the best decision for her. I just wanted to share my experience, as wigs have come a long way and the right wig can really enhance your day to day activities!

 

[MIGrandma]

I don't post here often. I didn't have breast cancer, but ovarian and uterine. I was diagnosed with both of them at the same time.

Sending prayers for your daughter MIGrandma. Cancer is so hard to go through and especially hard when you have young children at home. She is so lucky to have you and a supportive family. My Mom was a big help to me too!


I was just going to chime in on the wig. Obviously, if she doesn't want to do a wig and wants to go scarves that great, she should do whatever makes her the most comfortable. I was like Pea-n-Me and got two wigs, also paid for by insurance. Mine was very comfortable and held up great. My youngest son was on a ski team during that time and I had no problems standing at the bottom of the mountain with the wind gusting. My wig was great in the wind, rain, whatever.

What I liked BEST about my wig was that no one knew it was a wig. So unless I told someone that I was going through treatment, they did no know. A prime example of this was that I wore my wig throughout my sons high school baseball season. My friends knew about my cancer and the wig, because I told them, but the other Moms had no clue. Fast forward to the end of the high school season and the start of Legion baseball in the summer. Once my hair was about an inch long, I stopped wearing the wig. At that time, I shared with some of the other Moms about my cancer. They were totally shocked that we had gone through 3 months of high school ball, sitting right next to each other and they had no clue that I was sick or wearing a wig. I only mention all of this, because you mentioned that your daughter is very private and isn't looking forward to her co-workers knocking on her door once they notice that she has lost her hair.


I wore my wig all of the time except when I went to bed, then I had a soft hat to put on. Whatever your daughter decides will be the best decision for her. I just wanted to share my experience, as wigs have come a long way and the right wig can really enhance your day to day activities!

Thank you so much for sharing your experience with me, I am definitely going to mention to my daughter about people not knowing you had cancer because of the wig. It seems logical to me that if she doesn’t want co-workers to know, then a wig would be best. Maybe the breast cancer nurse my daughter has gotten close to, or her oncologist will give her some information on wigs, where to go, etc. Of course, it is totally her decision though.

Thanks so much for sending up a prayer for my DD. I appreciate it so much. And I hope you are doing well, sounds like you had a double whammy with two cancers at once, wow!

 

[Pea-n-Me]

Yes, I think that's what I was trying to say, too. That having a nice wig can make it so many don't even realize you have cancer, and you can continue on with life and work without others knowing if that's what you want. You just might have to search around for a good one that feels good. If it doesn't feel good, you don't want to wear it.

@fortwildernessishome, I don't think I knew you had a baseball player, too! My DS went on to become one later on, as my kids were just 5yo when I was diagnosed. (I think he might've done TBall by then.) I would've been out at games with mine as well! I did try to get out with them even during chemo, and the wig helped me do that and not feel like everyone was staring at me. I got a lot of compliments on it, and another parent I knew even asked me where I'd gotten my hair cut!

 

[maxaroni]

Update on our DD: The rest of her tests finally came back, and when the nurse talked to our DSIL she said that they shouldn't be surprised that the oncologist will recommend chemo. She goes the 23rd to see the oncologist (they asked me to go with them), and they have already scheduled her surgery for May 8th to have the port put in for the chemo. The nurse told DSIL that the chemo would be 4 days the first week, then one day per week for the next 11 weeks. Then she will have radiation following the chemo. So, it looks like it's going to be a l-o-n-g and difficult summer for DD.

The nurse also said she has never seen anyone NOT lose their hair, so DD is already preparing for that and got her hair cut short (it was fairly short before, but now much shorter) AND had it dyed DARK PURPLE!! She is trying to stay positive, and said she's not going to have her hair much longer so why not have some fun with it?!

She hasn't told anyone at work except her boss and the assistant managers (she is the personnel manager at our local Walmart, has worked there 18 years) but it's going to come out once she loses her hair and she's not looking forward to everyone knocking on her door asking how she's doing. She's pretty much a private person and wishes she could keep it that way. She doesn't want to wear a wig though, but has found some cute/pretty scarves.

So, please, if you could, send up a prayer or if you're not a believer good thoughts are most appreciated too. Thanks everyone!! It's so hard to see our DD go through this, but she has a supportive family in her husband and children (10 and 14) and on both sides of the family so I know she will get through this, and come out even stronger on the other side.

Sending prayers and good thoughts. I didn’t have cancer but my mom had breast cancer twice. Believe it or not, she did not lose her hair! The first time she had chemo and radiation, following a lumpectomy . She was told that even if she went for a mastectomy, she’d still need chemo and radiation, so opted to not go that route. She cried about losing her hair and I tried to tell her that no one would care and we love her and support her, we just wanted her healthy. However, I get it and it is more than a vanity issue. This was back in 1989 and she wore an experimental cap with ice during her treatment. Now, that seems to be more out there but had never heard of it back then. No clue if it helped or not, she could have just been one of the ones that didn’t lose her hair.

As far as a wig, it’s a personal choice, IMO. However, as some others have said, some wigs can be so realistic that people don’t realize you have cancer. My girlfriend had recently lost her father when she was diagnosed with breast cancer. Her mom lived 3 hours away and she wanted to tell her in person, and was a bit hesitant about telling her mom, after the loss of her dad. Between her hesitancy and her kids schedules, she didn’t get up to her moms until she had lost her hair. Her mom looked at her and said that she loved her new “do”. She had no clue. Oh, also people at the kids school had no clue, only the ones she told. However, it isn’t for everyone. A coworker opted for baseball caps & turbines.

I hated seeing my mom go through it, so I know how hard it is as a family member.

((((HUGS)))

 

[fortwildernessishome]

Thank you so much for sharing your experience with me, I am definitely going to mention to my daughter about people not knowing you had cancer because of the wig. It seems logical to me that if she doesn’t want co-workers to know, then a wig would be best. Maybe the breast cancer nurse my daughter has gotten close to, or her oncologist will give her some information on wigs, where to go, etc. Of course, it is totally her decision though.

Thanks so much for sending up a prayer for my DD. I appreciate it so much. And I hope you are doing well, sounds like you had a double whammy with two cancers at once, wow!

You are most welcome! Your daughter will do what is right for her, I just wanted to share my experience.

I am doing very well!! I was diagnosed in July 2011 and haven't had a recurrence which is a huge milestone with ovarian cancer! I had four significant "twist's of fate" that happened, that gave me the gift of an early diagnosis that usually doesn't happen for ladies with ovarian cancer.

 

[fortwildernessishome]

Yes, I think that's what I was trying to say, too. That having a nice wig can make it so many don't even realize you have cancer, and you can continue on with life and work without others knowing if that's what you want. You just might have to search around for a good one that feels good. If it doesn't feel good, you don't want to wear it.

@fortwildernessishome, I don't think I knew you had a baseball player, too! My DS went on to become one later on, as my kids were just 5yo when I was diagnosed. (I think he might've done TBall by then.) I would've been out at games with mine as well! I did try to get out with them even during chemo, and the wig helped me do that and not feel like everyone was staring at me. I got a lot of compliments on it, and another parent I knew even asked me where I'd gotten my hair cut!

Yes, both of my boys played baseball! Some of the best days of our lives!!! They were both pitchers and played shortstop when they weren't pitching. Unfortunately, my youngest suffered a freak knee injury at the end of his senior year. He was going for a routine ground ball, his knee went out, and what we originally thought was a "minor" injury turned into a serious life alternating injury. Three surgeries later and we are thankful that he longer needs a cane to walk. Been a rough road for a boy who was extremely athletic. He has never complained about it though and has taken up golf and bowling, which he has come to love.


Oh, I have to say that I also received numerous compliment on my "new" haircut too!!! Ha, ha!! I loved it!! Before cancer, I had long hair, but opted for a short wig on the advice of my hairdresser. She shared that she thought that the shorter style wigs were the most natural looking and for me, she was right. I had her cut my hair right before I started chemo. Then a month into chemo, I had her cut it shorter. So, when I started wearing a wig, I had gotten used to having shorter hair.

I agree that you have to search for a good one that is comfortable and feels good. I did have to go back to the wig shop 2-3 times to have it tightened and adjusted. I found a wig shop about 45 minutes from my house. They were wonderful. I made an appointment each time and was always warmly greeted and brought into a cozy private room, so no one besides my wig fitter saw me bald. They spent a lot of time with me trying on various wigs and brushing and styling the wig so I could see how I liked it. The other wonderful thing was they took care of all of the insurance billing, which was terrific. On my first appt. I gave them my prescription for a wig, written out by my oncologist. They did all of the paperwork and because of my insurance, I never had a bill at all. They made a tough and emotional situation as easy as it could be.

 

[Sdave]

Hi all I m new here, I m from Canada I had done my Brest ultrasound which came normal on Friday today I had don’t mammogram Nd tech told me that they will call me for few more pic once radiologist will see this ... now I m freaking out...I can’t sleep can’t eat and can’t stop crying since last week when my doc told me to do this ultrasound and memo for my pain Brest do anyone have idea??what I can expect?i m just furious since last week.. about this Nd now.. this

 

[Pea-n-Me]

Hi all I m new here, I m from Canada I had done my Brest ultrasound which came normal on Friday today I had don’t mammogram Nd tech told me that they will call me for few more pic once radiologist will see this ... now I m freaking out...I can’t sleep can’t eat and can’t stop crying since last week when my doc told me to do this ultrasound and memo for my pain Brest do anyone have idea??what I can expect?i m just furious since last week.. about this Nd now.. this

Generally if they are really worried, they will get you in asap. Try to figure out what your BIRAD score is.

 

[snappy]

Hi all I m new here, I m from Canada I had done my Brest ultrasound which came normal on Friday today I had don’t mammogram Nd tech told me that they will call me for few more pic once radiologist will see this ... now I m freaking out...I can’t sleep can’t eat and can’t stop crying since last week when my doc told me to do this ultrasound and memo for my pain Brest do anyone have idea??what I can expect?i m just furious since last week.. about this Nd now.. this

My experience in Louisiana was that when you have a screening mammogram, a radiologist does not read it right away. It is read right away by the radiologist if it’s a diagnostic mammogram. I know it’s stressful for you right now. I get nervous too when I have the diagnostic ones and the radiologist requests more views. It’s best for them to be thorough and be sure. Good luck and please update us when you can.

 

[Feralpeg]

Well, it's been a very busy month. Kendall saw the neurologist. He ordered another brain MRI and a cervical MRI. On Friday, she will have a lumbar puncture with fluoroscopy. They are looking for signs of myelin sheath breakdown and the possibility of Lyme Disease. She had a blood test that came back negative for Lyme Disease. She had two of the six factors, but the doctor said the blood tests are not reliable. It is still a possibility it could by Lyme Disease. She also has an appointment with a tremor specialist at Shands and a neuropsychologist to asses cognitive functioning.

I know it's a long shot, but I'm still praying it's Lyme Disease. That's curable! Kendall is pretty sure it's MS. Whatever it is, we just need to know so she can begin treatment. I think back to my little girl who loved to dance. Now, she's walking with a cane. It was actually easier for me when I was sick. I do the whole cancer thing again if I could just make her well again. So hard to watch her deteriorate.

On a brighter note, I hope you all had a wonderful Mother's Day! Always thinking of you!

 

[Dan Murphy]

Well, it's been a very busy month. Kendall saw the neurologist. He ordered another brain MRI and a cervical MRI. On Friday, she will have a lumbar puncture with fluoroscopy. They are looking for signs of myelin sheath breakdown and the possibility of Lyme Disease. She had a blood test that came back negative for Lyme Disease. She had two of the six factors, but the doctor said the blood tests are not reliable. It is still a possibility it could by Lyme Disease. She also has an appointment with a tremor specialist at Shands and a neuropsychologist to asses cognitive functioning.

I know it's a long shot, but I'm still praying it's Lyme Disease. That's curable! Kendall is pretty sure it's MS. Whatever it is, we just need to know so she can begin treatment. I think back to my little girl who loved to dance. Now, she's walking with a cane. It was actually easier for me when I was sick. I do the whole cancer thing again if I could just make her well again. So hard to watch her deteriorate.

On a brighter note, I hope you all had a wonderful Mother's Day! Always thinking of you!

Prayers are with Kendall, Peggy. Tough reading all that. 's

 

[Pea-n-Me]

Well, it's been a very busy month. Kendall saw the neurologist. He ordered another brain MRI and a cervical MRI. On Friday, she will have a lumbar puncture with fluoroscopy. They are looking for signs of myelin sheath breakdown and the possibility of Lyme Disease. She had a blood test that came back negative for Lyme Disease. She had two of the six factors, but the doctor said the blood tests are not reliable. It is still a possibility it could by Lyme Disease. She also has an appointment with a tremor specialist at Shands and a neuropsychologist to asses cognitive functioning.

I know it's a long shot, but I'm still praying it's Lyme Disease. That's curable! Kendall is pretty sure it's MS. Whatever it is, we just need to know so she can begin treatment. I think back to my little girl who loved to dance. Now, she's walking with a cane. It was actually easier for me when I was sick. I do the whole cancer thing again if I could just make her well again. So hard to watch her deteriorate.

On a brighter note, I hope you all had a wonderful Mother's Day! Always thinking of you!

Saying prayers for Kendall and you.

 

[Pea-n-Me]

@MIGrandma any recent updates on your DD?

 

[luvmarypoppins]

Sdave - wishing you all the best

MIgrandma - hope things are going as well as possible for your dd. Saw your other post and sorry you had to go through all of that.

Peg - Wishing Kendall all the best with the testing

Laurie - hope you had a great trip. Wish I was there. Miss seeing you!

Well I did the financially responsible thing and didn't go to Disney. We have had huge expenses dealing with DH dad's property. We also had to go to check on things. I fell in the bathroom of the hotel and hurt my knees. Still black and blue and hurt at times. If we go again I will ask for a handicapped room.

Got to celebrate my bday with everyone. Very nice.
Now today will be the start of the dental saga. I am sure this will be expensive. I think I need a root canal and 2 caps.

GAGWTA. Hope everyone is doing well.