Dis Breast Cancer Survivors Part IV - GAGWTA

[ThistleMae]

I had 6 rounds of what they called a serious chemo, after 2nd one I was bald, on the last one (6th) I lost my already thinned out eye brows, but everything come back, me hair is even thicker then before



keep showing us how to fight LMP

Who would have thought that going bald was the way to get a new head of beautiful hair!

 

[kittylady1972]

That is sad about your MIL, kittlylady. I'm glad you like the center and your port procedure went well (aside from the discomfort).

Thank you.

So sorry about your MIL....this last part of the process can be really hard. We stayed with my BIL through his last days, and it was so hard on my sister and the kids. They all decided that being in the hospital might be the way to go. I thought about this for a long time and although I would choose to die at home, if it's easier for the kids, I'll go to the hospital. I know this is all part of life but it never feels like there is enough time. No matter what...I'll stay positive, even if the news is challenging. I go to Disney in 29 days and I'm so looking forward to this special time with my cousin and her husband...first vacation we have ever done together and we are very close. I guess there is always something to look forward to, even in the midst of all the chaos, but choosing to stay strong can also be a challenge. My sister chose to keep information from her husband, afraid that if she told him everything he'd give up hope. But...he knew things were not going well and he couldn't talk about it to anyone because everyone one would say, don't say that, you can beat this. I believe there comes a time when the plain truth is a relief...and acceptance can bring a sort of peace.

It is not easy for sure but it's been a long struggle and fight for my MIL and she's been ready to go for quite some time. In some ways, that makes it easier because it is what she wants now. Still going to be tough on everybody for a while though, especially my FIL as they've been together since she was 19 years old (she just turned 71 in March). I hope you have a WONDERFUL time in Disney!

**********************

Quick update from me for now. Chemo and cold capping went just fine on Tuesday. The ativan given to me to help ease the pain of the cold caps and to take the edge off just made me sleepy so I think I slept quite a bit...not sure for how long. The cold wasn't as bad as the general discomfort of the cap which was very, very tight...and had to be to make sure it was making as much of a connection with my scalp as possible. We'll know in a few weeks or so how well that worked I guess.

I went back Wednesday for the Neulasta shot, choosing not to use the auto injector because it's pretty convenient for me to just visit the office. I've been taking claritin as prescribed which is supposed to help easy any possible pain from the shot. I came home and two hours after the shot had to take a long nap..and had a tough time sleeping that night but could have been from the nap and other stuff going on too. The next day I had some jaw and sore head/neck pain and some aches, it's gone today. I am feeling some residual muscle aches for right now. I'm going to attempt to play tennis tomorrow morning. I've been keeping myself very well hydrated, but yesterday afternoon water started tasting OFF...ugh. I have to flavor it with something or I can't tolerate it, and that's about all I drink most of the time except for some green tea.

My MIL went into hospice care at home on Monday, we all went to visit her Wednesday at the house and she continues to just weaken. I'm not sure she is even able to eat or drink much at all, maybe some ice chips because she can't use a straw. I don't think she'll be with us after this weekend as she was having breathing troubles today, but she is on oxygen already and has been for quite some time.

Lots of good thoughts to all of us here going through trying times right now. Thinking nothing but good wishes for all of you!

 

[rajak73]

Kittylady1972:

 

[luvmarypoppins]

kittylady - Prayers for your mil and for you too

 

[ThistleMae]

Thank you.



It is not easy for sure but it's been a long struggle and fight for my MIL and she's been ready to go for quite some time. In some ways, that makes it easier because it is what she wants now. Still going to be tough on everybody for a while though, especially my FIL as they've been together since she was 19 years old (she just turned 71 in March). I hope you have a WONDERFUL time in Disney!

**********************

Quick update from me for now. Chemo and cold capping went just fine on Tuesday. The ativan given to me to help ease the pain of the cold caps and to take the edge off just made me sleepy so I think I slept quite a bit...not sure for how long. The cold wasn't as bad as the general discomfort of the cap which was very, very tight...and had to be to make sure it was making as much of a connection with my scalp as possible. We'll know in a few weeks or so how well that worked I guess.

I went back Wednesday for the Neulasta shot, choosing not to use the auto injector because it's pretty convenient for me to just visit the office. I've been taking claritin as prescribed which is supposed to help easy any possible pain from the shot. I came home and two hours after the shot had to take a long nap..and had a tough time sleeping that night but could have been from the nap and other stuff going on too. The next day I had some jaw and sore head/neck pain and some aches, it's gone today. I am feeling some residual muscle aches for right now. I'm going to attempt to play tennis tomorrow morning. I've been keeping myself very well hydrated, but yesterday afternoon water started tasting OFF...ugh. I have to flavor it with something or I can't tolerate it, and that's about all I drink most of the time except for some green tea.

My MIL went into hospice care at home on Monday, we all went to visit her Wednesday at the house and she continues to just weaken. I'm not sure she is even able to eat or drink much at all, maybe some ice chips because she can't use a straw. I don't think she'll be with us after this weekend as she was having breathing troubles today, but she is on oxygen already and has been for quite some time.

Lots of good thoughts to all of us here going through trying times right now. Thinking nothing but good wishes for all of you!

Some days its hard to face the fact that we are all mortal. May she finally have peace.

 

[ThistleMae]

Today is my uterine biopsy. I've been told it's not very pleasant. Just going in and getting it done. Need chocolate today!

 

[luvmarypoppins]

ThistleMae - I hope the biopsy was not too painful and uncomfortable for you and that you are resting and recovering. Prayers for you.

kittylady - continued prayers for you and your family and mother in law during this time

Hope everyone had a good holiday.

Dh came home for lunch on monday and said did you see your neck. I said no because my bathroom mirror is up pretty high and he said its so red so I went to the ds bathroom and saw that it was really red and bad looking. So we sent some pictures to the surgeon in NYC. I talked to the nurse pract. and she said the surgeon looked at the pictures too. I had one from thurs. that dh took that showed my neck was fine. He said he does not like the look of it either. He said its not a hematoma. It cant be a wound infection because that happens -5 days post op and it could be cellulitis but he is not sure what it at this point and did mention cellulitis SO he put me back on a 10 day course of cipro. I have to go to the emergency room f I have trouble swallowing or breathing. So also dh marked my neck like they did with my arm in the hosp. to see if it is spreading. But it seems to be ok right now. sigh. Yup. I am the poster child for what can go wrong will go wrong and others things that they have never seen before. Why oh why lol.

 

[Tuffcookie]

Maryann, Oh no! I hope the cipro works!

TC

 

[robinb]

Oh no! I hope that it doesn't spread and the cipro works *right away*. Cellulitis is terrible.

 

[Dan Murphy]

Good morning, ladies, and guys also.

Hoping everyone is holding their own, making progress, progressing. Good to see you, Jason. I wish I had hair like you.

ThistleMae, I like your attitude!! Mary, hoping the cipro does the job for you. Marie has had cellulitis in her arm 4 times in past 5 years, it can be tough. kittylady, good wishes to you and your family, sounds l your mother-in-law.

As I've read here over the many past years, I always marvel at how you all rally around each other, giving advice, experiences, confort, support. Love you all.

 

[TheIncredibles!]

I'm having the worst time. I am five week past my last chemo and my hair is still coming out in clumps. I spent $1800 to cold cap and endured hours of discomfort and cold and while I still have hair it's still depressing. I have a huge bald spot that goes from ear to ear over the top of my head and only a small bit of hair left by my forehead to "comb back" to try and hide the bald. I have nothing left on the sides so I look like Christopher Lloyd except with some hair by my forehead. The hair I do have left though in the back is still shedding every time I comb. In clumps not even just random hairs. I know I should be happy I have hair but I put so much hope into cold capping that I am disappointed.

On top of that I just can't seem to bounce back from chemo plus I started rads already, 8 down, 27 left to go I am tired, I have neuropathy(sp) in my toes and my muscles HURT. Every day my arms and legs feel like I was exercising the day before even if all I did was relax. I can barely walk with the aches, the toes and the complete lack of energy and the tired some get from rads isn't even supposed to hit yet, the Oncologist said after next week i should start to see some symptoms. Great - this is going to get worse? I feel better than the first week right after Chemo but I thought I'd bounce back a bit better than this.

I'm just done in mentally because of this. There is not even a single day where I have felt close to the old me. The past 5 months has done so much damage that I wonder if I will ever feel like I did again. Sorry to be so negative but nobody else gets this. They placate and try and spin it positively but there's nothing positive about having cancer.

 

[TheIncredibles!]

Thank you.



It is not easy for sure but it's been a long struggle and fight for my MIL and she's been ready to go for quite some time. In some ways, that makes it easier because it is what she wants now. Still going to be tough on everybody for a while though, especially my FIL as they've been together since she was 19 years old (she just turned 71 in March). I hope you have a WONDERFUL time in Disney!

**********************

Quick update from me for now. Chemo and cold capping went just fine on Tuesday. The ativan given to me to help ease the pain of the cold caps and to take the edge off just made me sleepy so I think I slept quite a bit...not sure for how long. The cold wasn't as bad as the general discomfort of the cap which was very, very tight...and had to be to make sure it was making as much of a connection with my scalp as possible. We'll know in a few weeks or so how well that worked I guess.

I went back Wednesday for the Neulasta shot, choosing not to use the auto injector because it's pretty convenient for me to just visit the office. I've been taking claritin as prescribed which is supposed to help easy any possible pain from the shot. I came home and two hours after the shot had to take a long nap..and had a tough time sleeping that night but could have been from the nap and other stuff going on too. The next day I had some jaw and sore head/neck pain and some aches, it's gone today. I am feeling some residual muscle aches for right now. I'm going to attempt to play tennis tomorrow morning. I've been keeping myself very well hydrated, but yesterday afternoon water started tasting OFF...ugh. I have to flavor it with something or I can't tolerate it, and that's about all I drink most of the time except for some green tea.

My MIL went into hospice care at home on Monday, we all went to visit her Wednesday at the house and she continues to just weaken. I'm not sure she is even able to eat or drink much at all, maybe some ice chips because she can't use a straw. I don't think she'll be with us after this weekend as she was having breathing troubles today, but she is on oxygen already and has been for quite some time.

Lots of good thoughts to all of us here going through trying times right now. Thinking nothing but good wishes for all of you!

So sorry about your MIL Keeping you in my thoughts.

I'm glad capping went well. Yes the caps are uncomfortable, the chin straps were the worst for me, after the cold. Plus I hated having my ears covered. I never could get warm during chemo, I pretty much lightly shivered the whole time. What chemo are you on? TC or AC-T? I was on TC and the taste thing got progressively worse after each chemo. It's hard when water tastes off let alone everything else. There was one point where I could ONLY taste sweet, even straight red wine vinegar tastes like water to me. It was strange.

I did the Neulasta cartridge and the timing of it was great as it would go off between 7-9 pm depending on when I finished Chemo so I never had to deal with the initial effects during the day. I did find with Claritin that I had better results with the chalk like patties that melted in your mouth over the pill you swallow. No clue why as they appear to be the same thing.

 

[ThistleMae]

ThistleMae - I hope the biopsy was not too painful and uncomfortable for you and that you are resting and recovering. Prayers for you.

kittylady - continued prayers for you and your family and mother in law during this time

Hope everyone had a good holiday.

Dh came home for lunch on monday and said did you see your neck. I said no because my bathroom mirror is up pretty high and he said its so red so I went to the ds bathroom and saw that it was really red and bad looking. So we sent some pictures to the surgeon in NYC. I talked to the nurse pract. and she said the surgeon looked at the pictures too. I had one from thurs. that dh took that showed my neck was fine. He said he does not like the look of it either. He said its not a hematoma. It cant be a wound infection because that happens -5 days post op and it could be cellulitis but he is not sure what it at this point and did mention cellulitis SO he put me back on a 10 day course of cipro. I have to go to the emergency room f I have trouble swallowing or breathing. So also dh marked my neck like they did with my arm in the hosp. to see if it is spreading. But it seems to be ok right now. sigh. Yup. I am the poster child for what can go wrong will go wrong and others things that they have never seen before. Why oh why lol.

It's so scary isn't it? Thanks for the prayers. The biopsy was interesting. I got a shot to numb the area, and the procedure itself was not too bad, except for one little pinch but I got super dizzy from the numbing agent and was in so much pain on the drive home, I didn't think I was going to make it, really bad cramping. I had to pull over to the side of the road to throw up...omg....the cramping was almost unbearable. But once I got home, I put a heating pad on my belly and after about an hour the cramping subsided. Never expected that. Still waiting for the results and trying not to think the worst. You are such a trooper....staying so strong in spite of all the scary things...you are an inspiration for us. Thank you.

 

[luvmarypoppins]

kittylady - thinking of you and your family. Prayers being said

Mrs. Incredible - hope you are making it through the rads and its bearable for you

ThistleMae - any news from the biopsy yet? Wishing you all the best

Peg - how are you?

Missing smiley/Janet posting too. I hope she is having a good summer with her dgd's.

Today is my last dose of cipro at noonish. No coincidence that the surgeon in NYC PA called me last night and left a message that the surgeon wants to see a picture of my scar so we sent him 2 late last night. I am not worried if he does not call me back because if I get worse I will be calling him again lol. I did hear the PA catch herself in the message she left for me and said Dr. P is and I know she wanted to say is concerned but said something like he wants you to send him the pics et. Its improved except one area is red but not bright red and its red all along the scar line. So I guess its wait and see at this point again. My next visit is July 24.

ThistleMae - also saw your other thread about ins. but havent read it yet. This week I also got the eob from the surgery, yup one day i the hosp, dr., anesthesia etc. - $89,000. So far we have only had to pay $100 with $5k still pending so we shall see. Thank God dh has good insurance. It was better before but this company and plan seems to be ok.

GAGWTA

 

[ThistleMae]

kittylady - thinking of you and your family. Prayers being said

Mrs. Incredible - hope you are making it through the rads and its bearable for you

ThistleMae - any news from the biopsy yet? Wishing you all the best

Peg - how are you?

Missing smiley/Janet posting too. I hope she is having a good summer with her dgd's.

Today is my last dose of cipro at noonish. No coincidence that the surgeon in NYC PA called me last night and left a message that the surgeon wants to see a picture of my scar so we sent him 2 late last night. I am not worried if he does not call me back because if I get worse I will be calling him again lol. I did hear the PA catch herself in the message she left for me and said Dr. P is and I know she wanted to say is concerned but said something like he wants you to send him the pics et. Its improved except one area is red but not bright red and its red all along the scar line. So I guess its wait and see at this point again. My next visit is July 24.

ThistleMae - also saw your other thread about ins. but havent read it yet. This week I also got the eob from the surgery, yup one day i the hosp, dr., anesthesia etc. - $89,000. So far we have only had to pay $100 with $5k still pending so we shall see. Thank God dh has good insurance. It was better before but this company and plan seems to be ok.

GAGWTA

Wow...$ 89,000....no wonder we have such high premiums! So glad your redness has subsided....just so many weird things can happen and they dony always know whats up. I did get the biopsy back....negative! What a relief. I was actually reading about uterine cancer when i got the call. So, for now i seem to be okay. Thanks for asking. I am a breast cancer survivor and i always worry when i get my mamogram. I go for checkups every 6 mos. and elected not to take the meds they suggest, 2 many other complicated side effects, including ovarian cancer. But the reality seems to be they are having better and better results all the time. Keep us posted on how you are feeling. Im always here for support! And....Disney in a week and one day!!!

 

[Pea-n-Me]

I'm having the worst time. I am five week past my last chemo and my hair is still coming out in clumps. I spent $1800 to cold cap and endured hours of discomfort and cold and while I still have hair it's still depressing. I have a huge bald spot that goes from ear to ear over the top of my head and only a small bit of hair left by my forehead to "comb back" to try and hide the bald. I have nothing left on the sides so I look like Christopher Lloyd except with some hair by my forehead. The hair I do have left though in the back is still shedding every time I comb. In clumps not even just random hairs. I know I should be happy I have hair but I put so much hope into cold capping that I am disappointed.

On top of that I just can't seem to bounce back from chemo plus I started rads already, 8 down, 27 left to go I am tired, I have neuropathy(sp) in my toes and my muscles HURT. Every day my arms and legs feel like I was exercising the day before even if all I did was relax. I can barely walk with the aches, the toes and the complete lack of energy and the tired some get from rads isn't even supposed to hit yet, the Oncologist said after next week i should start to see some symptoms. Great - this is going to get worse? I feel better than the first week right after Chemo but I thought I'd bounce back a bit better than this.

I'm just done in mentally because of this. There is not even a single day where I have felt close to the old me. The past 5 months has done so much damage that I wonder if I will ever feel like I did again. Sorry to be so negative but nobody else gets this. They placate and try and spin it positively but there's nothing positive about having cancer.

I'm sorry you're having such a hard time and I'm sorry the cold cap didn't work like expected for you.

I have said this many times here over the years, and everyone's different, but the effects of chemotherapy are cumulative. It's designed to be that way. Just as potential distant cancer cells are getting back up again, chemo knocks them down again. Unfortunately, in the process, it knocks the person down, as well, because chemo affects the whole body. And just as you're trying to hold your head above water, they send you to radiation. There's a reason for that too. If any local cancer cells survived the surgery, and survived the chemo, radiation is going to knock them down before they have a chance to grow again. Unfortunately, it can really take a toll on the person whose body has endured all these insults. But there is good news in there - you will recover! It will take a while, but you will feel better as time goes on once your treatment ends. And this is the time to really takes stock of things. What, if any, changes to do you need to make in your life? How to care for yourself going forward? How to live with what you've been through, and for some, the fear of it returning. Those are questions you'll need to ask yourself, but it will keep you pretty busy. I found it difficult emotionally for quite a while. Physically, less so, although it all kicked my butt pretty well, too. There was no Claritin therapy when I had neulasta and taxol and the pain was almost unbearable some days. I felt like I was 90 years old, barely able to get out of bed and walk to the bathroom. Ugh. I was fortunate I never had any long term issues with neuropathies (thank God because my livelihood depends on my legs) but I know some people have. Hopefully you won't and the discomfort will fade as time goes forward. What I told myself, and I tell my own patients, is that we are fortunate to live in this day and age where we have these treatments. In days of the past we all might be gone now. So many of the discomforts of therapy are worth it, even if they do come at a cost. Hang in there for a bit longer, you're almost done. I'm glad you are able to come here and vent, we understand how difficult it is! You will feel better in days to come.

 

[ThistleMae]

I'm sorry you're having such a hard time and I'm sorry the cold cap didn't work like expected for you.

I have said this many times here over the years, and everyone's different, but the effects of chemotherapy are cumulative. It's designed to be that way. Just as potential distant cancer cells are getting back up again, chemo knocks them down again. Unfortunately, in the process, it knocks the person down, as well, because chemo affects the whole body. And just as you're trying to hold your head above water, they send you to radiation. There's a reason for that too. If any local cancer cells survived the surgery, and survived the chemo, radiation is going to knock them down before they have a chance to grow again. Unfortunately, it can really take a toll on the person whose body has endured all these insults. But there is good news in there - you will recover! It will take a while, but you will feel better as time goes on once your treatment ends. And this is the time to really takes stock of things. What, if any, changes to do you need to make in your life? How to care for yourself going forward? How to live with what you've been through, and for some, the fear of it returning. Those are questions you'll need to ask yourself, but it will keep you pretty busy. I found it difficult emotionally for quite a while. Physically, less so, although it all kicked my butt pretty well, too. There was no Claritin therapy when I had neulasta and taxol and the pain was almost unbearable some days. I felt like I was 90 years old, barely able to get out of bed and walk to the bathroom. Ugh. I was fortunate I never had any long term issues with neuropathies (thank God because my livelihood depends on my legs) but I know some people have. Hopefully you won't and the discomfort will fade as time goes forward. What I told myself, and I tell my own patients, is that we are fortunate to live in this day and age where we have these treatments. In days of the past we all might be gone now. So many of the discomforts of therapy are worth it, even if they do come at a cost. Hang in there for a bit longer, you're almost done. I'm glad you are able to come here and vent, we understand how difficult it is! You will feel better in days to come.

So sorry Incredibles for your struggles. Really good advice from Pea-n-me. I know when I hit bottom it's hard for me to see my way through the gloom. When I'm sick it feels like I've always been sick and are always going to be sick. But then it passes. And probably keeping your mind busy on other things is really hard when you feel so terrible. Do you like certain TV shows...have a "marathon" of the series you never saw but heard was mind bending! That would get my mind off things. So sorry about your hair. But cancer can't take away your heart. And yes, it is a nasty, horrible killer. Hang in there....vent anytime....we are all here for you!

 

[luvmarypoppins]

Mrs. Incredible - sorry things are rough for you. Linda and Thistle Mae gave you some great advice. These ladies are the best. I try to distract myself too. Mostly reading and I find that helps my brain focus too

kittylady - thinking of you and and prayers for your mil

Well guess who we got a nice e mail from. None other than Dr. P the surgeon. I am really impressed with this guys follow up. He said he likes how my neck looks and he will see us on the 24th.

Yest at church people were saying that I looked good. Hmm, I must have been looking pretty bad before and no one wanted to say anything lol.

This is actually the first time I am actually feeling more like me since the surgery, so its taken over a month so we shall see.

I was thinking of an oct. trip to food and wine but now dh says he has to go to South Korea for a week and that is not counting the travel days back and forth and all the prep days he will need ahead of time, sigh. I have a feeling I will be kissing that trip goodbye so I will see. He said he will accommodate me and make it work some how lol .After all of this I need a vacation sometime.

GAGWTA

 

[Tuffcookie]

Maryann, I'm glad to read your latest post! The fact that you are talking about trip planning again is great! Poor John, all that traveling back and forth. Maybe if Oct is out, you will get to see the Christmas decorations. Nobody does Christmas like Disney!

TC

 

[Feralpeg]

Hello, ladies! Sorry I've been AWOL. I've just had a lot going on. The good news is that my endoscopy showed a hiatal hernia. I'll take it! The doctor put me on 40 mg Nexium a day. it is helping. Oncologist appointment went well. All in all, life is good.

You are all in my thoughts and prayers!