Dis Breast Cancer Survivors Part IV - GAGWTA

[smiley_face2]

smiley - so glad to see you post and you are such a good mom to help out your dd. I am sure your grandkids bring you alot of joy too even though I am sure you and your dh have your hands full with them, but its such a blessing for sure.

Well in another chapter of my will this summer ever end because its just been such a doozy...
I now have an upper respiratory infection. I think ds3 got this from the hosp as he was sick for a while too. I went to the pcp and she feels its viral and does not want to give me any antibiotics and she said to call her tues or wed if it is not better or gets worse and then she will give me antibiotics sigh.

So in the meantime I am just taking some coricidin hbp, vicks, halls and hot tea and chicken soup at times. The worst is my voice when I wake up is barely there, She heard that its very raspy at times and it feels like my trachea is so tight in the morning. She feels that is because of the surgery and the cold virus settling there???

I just want to feel better. I still need to do all these tests this month so I better get better soon

Ds3 said 40 nurses quit in the emergency room, omg!! He helped out the other day. They all have to rotate to help at times.

Hope everyone is doing well. GAGWTA

I hope you start feeling better very soon! I think we only have about 40 nurses in our whole hospital in my small town! that is shocking!

 

[kittylady1972]

2/3 complete with the current phase of BC treatment...yay! Yesterday was Chemo (TC) #3 with #4 just 3 weeks away now. Hair is VERY VERY thin and definitely harder to hide the balding patch on the top but still glad I'm doing the DigniCap cold capping to keep what I have so far. I slept through most of my treatment (again) thanks to Ativan...oh well!

Our next Disney trip will be in TWO WEEKS! I'm so glad we are going through with it as I really think we can use it. It's been so hard to connect as a family with so much happening this summer and NO time for a summer vacation so this will be good. Kids are really looking forward to it, as am I, even if I'll be wearing a lot of hats during my time there!

Hope everybody here is doing well and lmp especially hope you are feeling better!

 

[snappy]

Feel better soon, LMP.
Glad your strategy with the DigniCap worked, Kittylady.

Checking in to say hi from Disney. DH and I were planning to go for a Food and Wine later but DD21 decided she wanted to go with her boyfriend before her college senior year started. Who knows when she will be able to go again.

We were able to do Flight of Passage and see happily ever after fireworks after eating at California grill. Lots of great meals as I did a lot of ADRs for vegan friendly places. Celebrated our 39th wedding anniversary. Weather hot but nice with am and pm breezes.

We do lazy river in morning and go to parks around noon. It works for this old gal.

Family time is a gift here. I love sharing it with DD's boyfriend who hasn't been here in years. How in the world did DD21 grow up so fast?

 

[Pea-n-Me]

Feel better soon, LMP.
Glad your strategy with the DigniCap worked, Kittylady.

Checking in to say hi from Disney. DH and I were planning to go for a Food and Wine later but DD21 decided she wanted to go with her boyfriend before her college senior year started. Who knows when she will be able to go again.

We were able to do Flight of Passage and see happily ever after fireworks after eating at California grill. Lots of great meals as I did a lot of ADRs for vegan friendly places. Celebrated our 39th wedding anniversary. Weather hot but nice with am and pm breezes.

We do lazy river in morning and go to parks around noon. It works for this old gal.

Family time is a gift here. I love sharing it with DD's boyfriend who hasn't been here in years. How in the world did DD21 grow up so fast?

Sounds heavenly! Happy Anniversary!

 

[kittylady1972]

Feel better soon, LMP.
Glad your strategy with the DigniCap worked, Kittylady.

Checking in to say hi from Disney. DH and I were planning to go for a Food and Wine later but DD21 decided she wanted to go with her boyfriend before her college senior year started. Who knows when she will be able to go again.

We were able to do Flight of Passage and see happily ever after fireworks after eating at California grill. Lots of great meals as I did a lot of ADRs for vegan friendly places. Celebrated our 39th wedding anniversary. Weather hot but nice with am and pm breezes.

We do lazy river in morning and go to parks around noon. It works for this old gal.

Family time is a gift here. I love sharing it with DD's boyfriend who hasn't been here in years. How in the world did DD21 grow up so fast?

Thanks! Yeah I've definitely got some balding going on and there's no chance of walking out of the house without some kind of hair pulled back or a ballcap right now.

HOW FUN! Sounds like a great trip so far. We LOVED FOP and have yet to see the HEA fireworks/show completely. We miss Cali Grill, haven't been there in a while.

So glad you are having some wonderful family time and I totally agree...a gift we should cherish always. I've got a HS Senior, a HS Freshman and an 8th grader and just got my HS Senior's yearbook photos/senior photos on Saturday and thought the same thing...where did my KID go??

 

[luvmarypoppins]

Laurie - Happy Anniversary and glad you had a great trip!!

kitty lady - hope you have a great trip too.

I am feeling better except for a strange pulling/tugging/tightness thing by my trachea. The surgeon did say before it was scar tissue, hmm??

Mon. we will try to see the surgeon in NYC again. Hope we make it this time lol, Tried to make a blood test appt. and of course no appts. available so I guess we will just go sat. and sit with the masses who also dont have appts. I dont know how early you have to make it. I tried 6 days out. I have to fast and the only available week days ones they had were like 1 pm. I am procrastinating making the other appts. At least I gathered all the paperwork. It just makes it all seem too real again sigh. I like my 6 month breaks but that is not the case right now.

GAGWTA. Hope everyone has a great week end.

 

[kittylady1972]

kitty lady - hope you have a great trip too.

I am feeling better except for a strange pulling/tugging/tightness thing by my trachea. The surgeon did say before it was scar tissue, hmm??

Mon. we will try to see the surgeon in NYC again. Hope we make it this time lol, Tried to make a blood test appt. and of course no appts. available so I guess we will just go sat. and sit with the masses who also dont have appts. I dont know how early you have to make it. I tried 6 days out. I have to fast and the only available week days ones they had were like 1 pm. I am procrastinating making the other appts. At least I gathered all the paperwork. It just makes it all seem too real again sigh. I like my 6 month breaks but that is not the case right now.

GAGWTA. Hope everyone has a great week end.

Thanks!

Sorry about the weird tugging sensation...scare tissue makes sense though.

Good luck getting to the surgeon. That sucks about the bloodwork...especially since you have to fast.

Ah 6 month breaks...I am a ways out from those days. This week I meet with my radio oncologist to discuss the next phase of this process. I hope I like her.

 

[ThistleMae]

smiley - so glad to see you post and you are such a good mom to help out your dd. I am sure your grandkids bring you alot of joy too even though I am sure you and your dh have your hands full with them, but its such a blessing for sure.

Well in another chapter of my will this summer ever end because its just been such a doozy...
I now have an upper respiratory infection. I think ds3 got this from the hosp as he was sick for a while too. I went to the pcp and she feels its viral and does not want to give me any antibiotics and she said to call her tues or wed if it is not better or gets worse and then she will give me antibiotics sigh.

So in the meantime I am just taking some coricidin hbp, vicks, halls and hot tea and chicken soup at times. The worst is my voice when I wake up is barely there, She heard that its very raspy at times and it feels like my trachea is so tight in the morning. She feels that is because of the surgery and the cold virus settling there???

I just want to feel better. I still need to do all these tests this month so I better get better soon

Ds3 said 40 nurses quit in the emergency room, omg!! He helped out the other day. They all have to rotate to help at times.

Hope everyone is doing well. GAGWTA

Wow, on top of everything else you got a virus! I hope as the cooler weather rolls in, you will feel better.

 

[snappy]

Laurie - Happy Anniversary and glad you had a great trip!!

kitty lady - hope you have a great trip too.

I am feeling better except for a strange pulling/tugging/tightness thing by my trachea. The surgeon did say before it was scar tissue, hmm??

Mon. we will try to see the surgeon in NYC again. Hope we make it this time lol, Tried to make a blood test appt. and of course no appts. available so I guess we will just go sat. and sit with the masses who also dont have appts. I dont know how early you have to make it. I tried 6 days out. I have to fast and the only available week days ones they had were like 1 pm. I am procrastinating making the other appts. At least I gathered all the paperwork. It just makes it all seem too real again sigh. I like my 6 month breaks but that is not the case right now.

GAGWTA. Hope everyone has a great week end.

LMP, Were you able to get your blood work done yesterday without waiting until lunch time after fasting?

Hope the tugging sensation in your neck has lessened. Maybe it has proceeded with healing and feels better by now.

Take care all!

GAGWTA!

 

[luvmarypoppins]

2 things off my list accomplished. The blood work was great. We went before 9 and were in and out in no time. Dh says we must do this next time. It seems the later the busier.

My surgeon visit went as well as could be I guess. This guy must have spent a total of 7 minutes with us. But we have to drive about 4 hours round trip to get there. He said my neck looked good and he answered all my questions rather quickly as usual. I feel he is getting too much into quantity versus quality. Yes he seems to be focusing just on the surgery stuff and the followup is lightening speed. sigh.
1. He didnt know what that red stuff was on my neck
2. He explained about the wired veins and arteries he found during surgery. He thinks since I lost the one artery on the L side the right side has compensated and made new pathways so now I have a very strange anatomy on the R side that is tricky surgically I guess. Yup thats me, oh joy!
3. I asked him bout the path report that said a ruptured. I thought it meant it ruptured in me but he says it either broke when he got it out or the pathologist broke it will doing the pathology.
4. Asked him about follow up since I have now lost the cancer blood marker test and I lost being about to have rai radiation again He said just do sonograms every six months and a pet scan once a year and he said - dont worry, if it comes back we will take care of it, ok.

He said come back in six months for the last follow up. made the appt. but will cancel it in the new year. I feel he doesnt really spend time or care about me and its just not worth it to me. He accomplished what I needed and its all good so far. Dh also is getting weary of doing to NYC and has his own stuff do do here at work.

I also had a issue that I asked him before but not this time because I dint think it mattered but now in doing some research I am wondering. They didnt list my rare variant and he said last time, well if you want me to have them c heck the lymph node ling for it, I will. I didnt say yes or no. But now dh says I should. Some research says you should and I am thinking does it matter? They know what I have etc?

So I will also run this by the endo next week. I dont know if my ins. will cover it either now. I also wonder why they didnt do it. I just assumed it was something routine. Nut maybe this place is different. My head spins.

DS1 took the train into the city yest to another hosp. They said he needs a hip replacement. This is the third dr. to tell him this.

GAGWTA. Hope everyone is well

 

[Pea-n-Me]

2 things off my list accomplished. The blood work was great. We went before 9 and were in and out in no time. Dh says we must do this next time. It seems the later the busier.

My surgeon visit went as well as could be I guess. This guy must have spent a total of 7 minutes with us. But we have to drive about 4 hours round trip to get there. He said my neck looked good and he answered all my questions rather quickly as usual. I feel he is getting too much into quantity versus quality. Yes he seems to be focusing just on the surgery stuff and the followup is lightening speed. sigh.
1. He didnt know what that red stuff was on my neck
2. He explained about the wired veins and arteries he found during surgery. He thinks since I lost the one artery on the L side the right side has compensated and made new pathways so now I have a very strange anatomy on the R side that is tricky surgically I guess. Yup thats me, oh joy!
3. I asked him bout the path report that said a ruptured. I thought it meant it ruptured in me but he says it either broke when he got it out or the pathologist broke it will doing the pathology.
4. Asked him about follow up since I have now lost the cancer blood marker test and I lost being about to have rai radiation again He said just do sonograms every six months and a pet scan once a year and he said - dont worry, if it comes back we will take care of it, ok.

He said come back in six months for the last follow up. made the appt. but will cancel it in the new year. I feel he doesnt really spend time or care about me and its just not worth it to me. He accomplished what I needed and its all good so far. Dh also is getting weary of doing to NYC and has his own stuff do do here at work.

I also had a issue that I asked him before but not this time because I dint think it mattered but now in doing some research I am wondering. They didnt list my rare variant and he said last time, well if you want me to have them c heck the lymph node ling for it, I will. I didnt say yes or no. But now dh says I should. Some research says you should and I am thinking does it matter? They know what I have etc?

So I will also run this by the endo next week. I dont know if my ins. will cover it either now. I also wonder why they didnt do it. I just assumed it was something routine. Nut maybe this place is different. My head spins.

DS1 took the train into the city yest to another hosp. They said he needs a hip replacement. This is the third dr. to tell him this.

GAGWTA. Hope everyone is well

I would seriously reconsider cancelling this. You may need him in the future, and if you haven't followed up, they can "lose faith" in you as a patient. He sounds like a good surgeon who is very busy - typical of better surgeons in big hospitals. He may be quick, but I wouldn't assume he doesn't care about you; that's just his style. I think you should take a page from his book and try to worry less about the details you can't control. It sounds like things are going well. Try to be happy with that!

 

[ThistleMae]

2/3 complete with the current phase of BC treatment...yay! Yesterday was Chemo (TC) #3 with #4 just 3 weeks away now. Hair is VERY VERY thin and definitely harder to hide the balding patch on the top but still glad I'm doing the DigniCap cold capping to keep what I have so far. I slept through most of my treatment (again) thanks to Ativan...oh well!

Our next Disney trip will be in TWO WEEKS! I'm so glad we are going through with it as I really think we can use it. It's been so hard to connect as a family with so much happening this summer and NO time for a summer vacation so this will be good. Kids are really looking forward to it, as am I, even if I'll be wearing a lot of hats during my time there!

Hope everybody here is doing well and lmp especially hope you are feeling better!

Whoo hoo, the Disney trip will be great...good moral booster...don't even think about treatment...take a treatment vacation!

 

[ThistleMae]

2 things off my list accomplished. The blood work was great. We went before 9 and were in and out in no time. Dh says we must do this next time. It seems the later the busier.

My surgeon visit went as well as could be I guess. This guy must have spent a total of 7 minutes with us. But we have to drive about 4 hours round trip to get there. He said my neck looked good and he answered all my questions rather quickly as usual. I feel he is getting too much into quantity versus quality. Yes he seems to be focusing just on the surgery stuff and the followup is lightening speed. sigh.
1. He didnt know what that red stuff was on my neck
2. He explained about the wired veins and arteries he found during surgery. He thinks since I lost the one artery on the L side the right side has compensated and made new pathways so now I have a very strange anatomy on the R side that is tricky surgically I guess. Yup thats me, oh joy!
3. I asked him bout the path report that said a ruptured. I thought it meant it ruptured in me but he says it either broke when he got it out or the pathologist broke it will doing the pathology.
4. Asked him about follow up since I have now lost the cancer blood marker test and I lost being about to have rai radiation again He said just do sonograms every six months and a pet scan once a year and he said - dont worry, if it comes back we will take care of it, ok.

He said come back in six months for the last follow up. made the appt. but will cancel it in the new year. I feel he doesnt really spend time or care about me and its just not worth it to me. He accomplished what I needed and its all good so far. Dh also is getting weary of doing to NYC and has his own stuff do do here at work.

I also had a issue that I asked him before but not this time because I dint think it mattered but now in doing some research I am wondering. They didnt list my rare variant and he said last time, well if you want me to have them c heck the lymph node ling for it, I will. I didnt say yes or no. But now dh says I should. Some research says you should and I am thinking does it matter? They know what I have etc?

So I will also run this by the endo next week. I dont know if my ins. will cover it either now. I also wonder why they didnt do it. I just assumed it was something routine. Nut maybe this place is different. My head spins.

DS1 took the train into the city yest to another hosp. They said he needs a hip replacement. This is the third dr. to tell him this.

GAGWTA. Hope everyone is well

Wow...I'm overwhelmed just hearing it all, never mind living through it. Is there any rest for you? What are you doing to keep your mind off things?

 

[ThistleMae]

Well, I'm bleeding again. Going to need to go back to the doc and get further testing done. Here we go again.

 

[snappy]

Well, I'm bleeding again. Going to need to go back to the doc and get further testing done. Here we go again.

Sorry to hear about the bleeding. Please give us an update on how you are doing when you can.

Were you able to take your trip back in July?

 

[ThistleMae]

Sorry to hear about the bleeding. Please give us an update on how you are doing when you can.

Were you able to take your trip back in July?

Yes...thank you...and I was able to walk. The last two trips I had to use an ECV because of a bad knee. I've since had that replaced but am still in recovery...still painful walking up and down stairs...but I'm pushing through. The trip was amazing. FOP is my new favorite ride of all time. We are going back in February...as a family reunion...we already have our room and tickets. There will be 11 of us....so looking forward to that trip...makes everything else that's going on easier to deal with. I'm always looking for my next vacation...because you never know how short life may be.

 

[kittylady1972]

Yes...thank you...and I was able to walk. The last two trips I had to use an ECV because of a bad knee. I've since had that replaced but am still in recovery...still painful walking up and down stairs...but I'm pushing through. The trip was amazing. FOP is my new favorite ride of all time. We are going back in February...as a family reunion...we already have our room and tickets. There will be 11 of us....so looking forward to that trip...makes everything else that's going on easier to deal with. I'm always looking for my next vacation...because you never know how short life may be.

So any word on your latest issue with bleeding? I'll be thinking of you.

Glad you made the July trip and agree with you on FOP...such a GREAT ride! Definitely our new favorite there.

 

[kittylady1972]

So it's been an interesting two weeks for us.

Last week I had this:

So chemo is now behind me, hopefully for good. My post-chemo hair situation...pretty sad but I'm coping with it via a hat and lots of headbands to hide the major bald patch on the top of my head. I still have eyebrows and eyelashes FOR NOW. We'll see what happens in the next few weeks.

Radiation will begin later this month. I have already consulted with the radio oncologist and will do my mapping on Sept 18th with her. I'm also still waiting for word on scheduling to have my port removed. I'd like to get that done as soon as possible, especially now that I've reached the maximum out of pocket on my insurance this year and won't have to pay for it.

Our Disney trip last month was FABULOUS...you can read a little about it in my links in my siggy. I'm trying to post the TR but I'm behind of course.

AND the next trip is on the horizon now as well...scheduled for 6 weeks from tomorrow! This will be a large group of friends, some who have never been, so it has been interesting to plan for 15-20 people! We are looking forward to it for sure though.

Thinking of all of you here an hope all is well.

 

[snappy]

So it's been an interesting two weeks for us.

Last week I had this:

So chemo is now behind me, hopefully for good. My post-chemo hair situation...pretty sad but I'm coping with it via a hat and lots of headbands to hide the major bald patch on the top of my head. I still have eyebrows and eyelashes FOR NOW. We'll see what happens in the next few weeks.

Radiation will begin later this month. I have already consulted with the radio oncologist and will do my mapping on Sept 18th with her. I'm also still waiting for word on scheduling to have my port removed. I'd like to get that done as soon as possible, especially now that I've reached the maximum out of pocket on my insurance this year and won't have to pay for it.

Our Disney trip last month was FABULOUS...you can read a little about it in my links in my siggy. I'm trying to post the TR but I'm behind of course.

AND the next trip is on the horizon now as well...scheduled for 6 weeks from tomorrow! This will be a large group of friends, some who have never been, so it has been interesting to plan for 15-20 people! We are looking forward to it for sure though.

Thinking of all of you here an hope all is well.

So it's been an interesting two weeks for us.

Last week I had this:

So chemo is now behind me, hopefully for good. My post-chemo hair situation...pretty sad but I'm coping with it via a hat and lots of headbands to hide the major bald patch on the top of my head. I still have eyebrows and eyelashes FOR NOW. We'll see what happens in the next few weeks.

Radiation will begin later this month. I have already consulted with the radio oncologist and will do my mapping on Sept 18th with her. I'm also still waiting for word on scheduling to have my port removed. I'd like to get that done as soon as possible, especially now that I've reached the maximum out of pocket on my insurance this year and won't have to pay for it.

Our Disney trip last month was FABULOUS...you can read a little about it in my links in my siggy. I'm trying to post the TR but I'm behind of course.

AND the next trip is on the horizon now as well...scheduled for 6 weeks from tomorrow! This will be a large group of friends, some who have never been, so it has been interesting to plan for 15-20 people! We are looking forward to it for sure though.

Thinking of all of you here an hope all is well.

 

[snappy]

Congrats on finishing chemo, Kittylady!

Your August trip report so far is unbelievably good. Felt like I was there! The photos add so much. I love that you have another one to plan as well. You have really made use of the annual pass. Glad you enjoyed your trip.

I have a couple of february DVC reservations. Not sure which one I will keep. We are talking about a Fall manhattan trip. No progress except talking.

I am glad I am not headed to Orlando this week. Irma has me on edge. Could continue west and whack us. I am going to get supplies this morning. My brother was in town for Labor Day weekend. It's time to get back into a routine.