Dis Breast Cancer Survivors Part IV - GAGWTA

[rajak73]

Just popping in quick as I've got ice packs on me. 1 week post surgery for lymph nodes. Surgery day was crazy. Scheduled for early morning and wasn't operated on til 10:30pm! It was a fiasco!

Lymph nodes were negative!! This 2nd surgery hurts so badly. Must be nerves because it's burning, searing, shooting pain. Follow up visit is tomorrow. No visible swelling, but a good bit of bruising.

That's great news! PA told DW that the node surgery "angers" the nerves because they have to move them, she told her she hoped they got happy pretty soon! DW started radiation on Oct 6. Four weeks and then the pill for 5 years. I still feel blessed!

 

[lovethattink]

Hey Tink! I neglectd to say hurray for your negative nodes!! I remember the day I got that news was so exciting! One of the last messages I ever got from my son, how happy he was, he was doin the happy dance at work. Fortunately we have an extra thing with our insurance, so they will pay for a loaner for us. I Took the day off!! Cooked an amazing cioppino had it with san francisco sourdough bread and some delish autumn wine, and some irish hot chocolate for dessert! Didnt even think about calories or sugar or anything, just savoured and relaxed! Might just keep my phone turned off tomorrow again! Lol

That's great your insurance pays for rental! You're making me hungry. Sounds yummy. Glad you were able to enjoy your day.

That's great news! PA told DW that the node surgery "angers" the nerves because they have to move them, she told her she hoped they got happy pretty soon! DW started radiation on Oct 6. Four weeks and then the pill for 5 years. I still feel blessed!

How is the radiation going? How long after her surgery did she start? I go to two oncologists on Monday to discuss the treatment plan.

My nodes are quite angry! Did she start radiation with angry nodes?

Ended up being 9 modes taken out. She thought she took out 4 and one of the four was suspicious. The suspicious one turned out to be 5 nodes, another was 2 nodes together, and the others two nodes were single. My incision is a good 4 inches long. Almost parallel to the lumpectomy incision.

 

[rajak73]

lovethattink: DW started almost 4 wks after surgery. It's not going to bad, using some Gold Bond with lidocaine at times for the minor burning sensation. DW said "yes, the nerves were still pissed" when she started but pretty well gone now. She's in the stage now where the scar tissue and everything is trying to get adjusted in the right places so a little sore at times. The PA told her that would happen about 6 weeks after surgery. They put some tattoos on but remarked with magic marker because the techs can't seem to line up the tattoos. DW is more than half-way done with radiation now so looking forward to only 9 more treatments. I get to go see her oncologist the first part of November for anemia, lol, he's also a Hematologist. Maybe we can get a family discount.
Forgot to say, there's another lady taking the same treatment as DW except she's one treatment ahead, they got to talking one day, both the first and middle names are the same. How ironic is that!

 

[lovethattink]

I'm pretty clueless. I have no idea what to expect. So I did everything this weekend in case I start radiation soon.

Spent a couple hours at parks trying to get in what we could. Went to Epcot Friday. 2nd visit towards the AP glass. Took ds to Sea World Saturday to go trick or treating at the Halloween Spooktacular. And last night went back to Epcot for the AP glass and to try some food at the festival.

It was so nice to have some Disney therapy!!

lovethattink: DW started almost 4 wks after surgery. It's not going to bad, using some Gold Bond with lidocaine at times for the minor burning sensation. DW said "yes, the nerves were still pissed" when she started but pretty well gone now. She's in the stage now where the scar tissue and everything is trying to get adjusted in the right places so a little sore at times. The PA told her that would happen about 6 weeks after surgery. They put some tattoos on but remarked with magic marker because the techs can't seem to line up the tattoos. DW is more than half-way done with radiation now so looking forward to only 9 more treatments. I get to go see her oncologist the first part of November for anemia, lol, he's also a Hematologist. Maybe we can get a family discount.
Forgot to say, there's another lady taking the same treatment as DW except she's one treatment ahead, they got to talking one day, both the first and middle names are the same. How ironic is that!

Thanks, that's helpul.

Any questions I should ask today at my appointments?

What a coincidence to make a new friend there with same name!

Best wishes with your anemia.

 

[rajak73]

We didn't end up with many questions, they pretty well went over everything. They gave DW a sheet with products for possible sunburn from the radiation, (DW hasn't had that problem yet) soreness, etc. Only downside right now is, the radiation is Mon-Friday and the radiation center is 30 miles away. So she has to drive 5 days a week but it has went quick. She starts her last full week today! Thanks for the good wishes, didn't even know about the anemia until I passed out one Sunday morning and ended up in ER, they did blood test and showed the hemoglobin low. If you have anymore questions, I'll ask DW and will try to answer. Have a great day! Just to add, wish we lived closer to Disney for the same type of therapy! LOL

 

[smiley_face2]

I'm pretty clueless. I have no idea what to expect. So I did everything this weekend in case I start radiation soon.

Spent a couple hours at parks trying to get in what we could. Went to Epcot Friday. 2nd visit towards the AP glass. Took ds to Sea World Saturday to go trick or treating at the Halloween Spooktacular. And last night went back to Epcot for the AP glass and to try some food at the festival.

It was so nice to have some Disney therapy!!




Thanks, that's helpul.

Any questions I should ask today at my appointments?

What a coincidence to make a new friend there with same name!

Best wishes with your anemia.

Disney therapy is the best!! we went in between my chemo and radiation, I was so weak, hubby kept pushing me to get a scooter, but I refused! I think that trip did a lot to build my strength back up to face the rest! ate my way through the parks, gained back a few of the 35 pounds I had lost! and then right after I finished with radiation, we took 2 of our grand daughters back again! lol! I so admire your strength!! to be going through this with small children full time, would be so very hard, both physically and emotionally! I pray for your continued strength and your recovery!

 

[lovethattink]

I had my appointment yesterday. Got started on Tamoxifen. Today I go back for radiation mapping. I'm not to happy about permanent tatoos. But I'm ready to get this started and out of the way.
How does mapping work? My appointment card says CT Sim??

We didn't end up with many questions, they pretty well went over everything. They gave DW a sheet with products for possible sunburn from the radiation, (DW hasn't had that problem yet) soreness, etc. Only downside right now is, the radiation is Mon-Friday and the radiation center is 30 miles away. So she has to drive 5 days a week but it has went quick. She starts her last full week today! Thanks for the good wishes, didn't even know about the anemia until I passed out one Sunday morning and ended up in ER, they did blood test and showed the hemoglobin low. If you have anymore questions, I'll ask DW and will try to answer. Have a great day! Just to add, wish we lived closer to Disney for the same type of therapy! LOL

Congratulations on almost over! My drive is closeby, thankfully. The appointment went well. I have literature to read.

Disney therapy is the best!! we went in between my chemo and radiation, I was so weak, hubby kept pushing me to get a scooter, but I refused! I think that trip did a lot to build my strength back up to face the rest! ate my way through the parks, gained back a few of the 35 pounds I had lost! and then right after I finished with radiation, we took 2 of our grand daughters back again! lol! I so admire your strength!! to be going through this with small children full time, would be so very hard, both physically and emotionally! I pray for your continued strength and your recovery!

Glad you were able to escape to Disney. Disney therapy really is the best!
I have 1 adult child. And another who is 12, but has special needs and is homeschooled. My dh helps a lot.

 

[The Mystery Machine]

Lovethattink, so glad to hear things are going "well" for you.

Update on myself...I am heading to the Mayo Clinic in AZ this week. I will let you folks know how it goes.

I am doing better however I still have swelling in my whole body.

 

[Dancind]

I hope you get some answers, MM.

 

[rajak73]

I had my appointment yesterday. Got started on Tamoxifen. Today I go back for radiation mapping. I'm not to happy about permanent tatoos. But I'm ready to get this started and out of the way.
How does mapping work? My appointment card says CT Sim??

Ah the tattoos are only a dot, you will never see them. I told DW to tell them to tattoo a butterfly on but they said she wouldn't want them to do that! They marked DW with magic marker and them put tape over so the marks didn't rub off until they were sure she lined up with everything before they did the tat. I told here while she was sleeping I was going to get a marker and draw on her too. You've started on the pill, just shows the difference doctors and places, DW will start after the radiation. Good luck and keep us posted!

Update on myself...I am heading to the Mayo Clinic in AZ this week. I will let you folks know how it goes.


I am doing better however I still have swelling in my whole body.

 

[lovethattink]

Lovethattink, so glad to hear things are going "well" for you.

Update on myself...I am heading to the Mayo Clinic in AZ this week. I will let you folks know how it goes.

I am doing better however I still have swelling in my whole body.

I'm very swollen under my pit and my breast is slightly swollen. I'm in pain. I can't even begin to imagine the discomfort of whole body swelling. I hope you get answers and some relief.

Ah the tattoos are only a dot, you will never see them. I told DW to tell them to tattoo a butterfly on but they said she wouldn't want them to do that! They marked DW with magic marker and them put tape over so the marks didn't rub off until they were sure she lined up with everything before they did the tat. I told here while she was sleeping I was going to get a marker and draw on her too. You've started on the pill, just shows the difference doctors and places, DW will start after the radiation. Good luck and keep us posted!

The one tattoo I can't even see. The other I can.

I know what you mean about the differences. My friend was diagnosed after me and her treatment plan from the start was totally different. We have the same doctor, same diagnosis.

 

[luvmarypoppins]

TMM - Hoping you get some answers from Mayo. Wishing you all the best

love thattink - wishing you all the best with the radiation. Glad you got to get in some Disney time. It sure helps. It was what I was looking forward to for a whole year after surgery.

rajak - wishing you and your wife all the best with the upcoming treatments and dr. visits.

Well we are back from the disney trip. Boy ds sure likes to do alot, so he pushed me alot in the wheelchair. I could tell he was getting annoyed by how slow I walked. He was really sick when we got there but was feeling better by wed. It was hard changing hotels 3 times, a big time waster but the only way we could get the rooms. Our one Swan room was ok, but was in the midst of the conference. Our room at the yacht club was fabulous, we had an upgrade looking at crescent lake, amazing! Our last room at the Swan was so so.

The Food and Wine food was good and we enjoyed Skippers in MK. Ds and I did the AK at night, but not the safari we did that in the day time. We also got to see Hallowishes from Ohanas. Saw some of it again from the Boardwalk. I rode the new Frozen ride. It broke before we got on it and it took dh and ds to get me in and out and I hurt my knees on the hard plastic. Def. a one and done ride for me. I didnt even like the theming. It looked cheap and cheesy.

Swam twice in Storm along Bay and I was eating a lobster roll slider from F & W while listening to Chriss Cross singing Sail Away in the background. It just doesnt get any better than that.!! Seeing everyones costumes before MNSSHP was fun. (We didnt go to the party). My favorite was a guy dressed up as Buddy the Elf. Loved the new Soarin!

And in other news we finally got our van back tonight, PTL!! It was over 6K in damage. That other ins. company was horrible. They get 1 star ratings on yelp and everyone says they would give them 0 if they could. Its actually 3 companies. lies, run around, holding, unreturned calls, etc. yup, poor dh went through it all. God help the people who have that ins. or get in an accident with someone who does. It took them 2 months to finally settle this.

Mon I am going to the dr. Its a new one since they refuse to give me the mammo script until I see the dr. I told them I refuse to go to the dr. who I had before. She was too test crazy and no compassion or bedside manner. This one is young, so we shall see. Hmm, it says I have to write reason for visit - does holding my mammo script hostage sound appropriate? Lol!! I will get a flu shot too, got to get my co pay moneys worth out of this.

My dh now might have to go to China but he is hoping he does not have to, somehow I see it in his future before the end of the year, sigh. He asked someone else to go and they refused.

GAGWTA

 

[lovethattink]

TMM - Hoping you get some answers from Mayo. Wishing you all the best

love thattink - wishing you all the best with the radiation. Glad you got to get in some Disney time. It sure helps. It was what I was looking forward to for a whole year after surgery.

rajak - wishing you and your wife all the best with the upcoming treatments and dr. visits.

Well we are back from the disney trip. Boy ds sure likes to do alot, so he pushed me alot in the wheelchair. I could tell he was getting annoyed by how slow I walked. He was really sick when we got there but was feeling better by wed. It was hard changing hotels 3 times, a big time waster but the only way we could get the rooms. Our one Swan room was ok, but was in the midst of the conference. Our room at the yacht club was fabulous, we had an upgrade looking at crescent lake, amazing! Our last room at the Swan was so so.

The Food and Wine food was good and we enjoyed Skippers in MK. Ds and I did the AK at night, but not the safari we did that in the day time. We also got to see Hallowishes from Ohanas. Saw some of it again from the Boardwalk. I rode the new Frozen ride. It broke before we got on it and it took dh and ds to get me in and out and I hurt my knees on the hard plastic. Def. a one and done ride for me. I didnt even like the theming. It looked cheap and cheesy.

Swam twice in Storm along Bay and I was eating a lobster roll slider from F & W while listening to Chriss Cross singing Sail Away in the background. It just doesnt get any better than that.!! Seeing everyones costumes before MNSSHP was fun. (We didnt go to the party). My favorite was a guy dressed up as Buddy the Elf. Loved the new Soarin!

And in other news we finally got our van back tonight, PTL!! It was over 6K in damage. That other ins. company was horrible. They get 1 star ratings on yelp and everyone says they would give them 0 if they could. Its actually 3 companies. lies, run around, holding, unreturned calls, etc. yup, poor dh went through it all. God help the people who have that ins. or get in an accident with someone who does. It took them 2 months to finally settle this.

Mon I am going to the dr. Its a new one since they refuse to give me the mammo script until I see the dr. I told them I refuse to go to the dr. who I had before. She was too test crazy and no compassion or bedside manner. This one is young, so we shall see. Hmm, it says I have to write reason for visit - does holding my mammo script hostage sound appropriate? Lol!! I will get a flu shot too, got to get my co pay moneys worth out of this.

My dh now might have to go to China but he is hoping he does not have to, somehow I see it in his future before the end of the year, sigh. He asked someone else to go and they refused.

GAGWTA

Wonder if we saw you in passing? We were at F&W on Friday and Sunday.

Hope the new doc works out.

How long would he be in China?

 

[rajak73]

DW is down to 4 treatments left. She says it will be so nice when she can put on regular clothes again and not hurt anywhere.

Tink: how many treatments are you doing? DW had 20 with the last 6 being a boost. The boost just targets the area of the surgery. She is getting along pretty good, just a little burning after the treatments but the gold bond with lidocaine helps a lot she says.

 

[lovethattink]

DW is down to 4 treatments left. She says it will be so nice when she can put on regular clothes again and not hurt anywhere.

Tink: how many treatments are you doing? DW had 20 with the last 6 being a boost. The boost just targets the area of the surgery. She is getting along pretty good, just a little burning after the treatments but the gold bond with lidocaine helps a lot she says.

What kind of clothes is she wearing?

I'll be having 8 boosts. Tuesday is my filming day/mock run. 35 total treatments including the mock and 8 boosts.

Glad the gold bond is working! I was told to buy miaderm. 4 oz costs a fortune. I haven't bought it yet. Did she start applying right away on day 1?

I moved things around and I check into CBR tomorrow! Only 2 nights. A nice break before radiation starts Wednesday.

 

[rajak73]

What kind of clothes is she wearing?

I'll be having 8 boosts. Tuesday is my filming day/mock run. 35 total treatments including the mock and 8 boosts.

Glad the gold bond is working! I was told to buy miaderm. 4 oz costs a fortune. I haven't bought it yet. Did she start applying right away on day 1?

I moved things around and I check into CBR tomorrow! Only 2 nights. A nice break before radiation starts Wednesday.

Beginning she just wore like a cami shirt and a shirt on top of that because the arm was still a little sore, no bra, she said had to take it off anyway. DW thinks that miaderm was on her list too but the Gold bond is working alright and we bought it at a CVS pharmacy at a buy one, get second 50% off so wasn't too bad. Didn't start burning until about the second week so that's when we started with the gold bond. They also had solarcaine on the list. She said she can't feel and of the radiation, but after the treatment, that's when she can feel a little burn. Funny story, DW was marked with magic marker for line-up spots, etc. I told her some night while she was asleep I was going to draw on her too. Well, for the boost, they put a big circle with magic marker on the spot and I laughed, told DW I could have did that with the marker. Glad you get a little break before at the CBR! Our therapy is tickets for the Nebraska Womens Volleyball team.

 

[lovethattink]

Beginning she just wore like a cami shirt and a shirt on top of that because the arm was still a little sore, no bra, she said had to take it off anyway. DW thinks that miaderm was on her list too but the Gold bond is working alright and we bought it at a CVS pharmacy at a buy one, get second 50% off so wasn't too bad. Didn't start burning until about the second week so that's when we started with the gold bond. They also had solarcaine on the list. She said she can't feel and of the radiation, but after the treatment, that's when she can feel a little burn. Funny story, DW was marked with magic marker for line-up spots, etc. I told her some night while she was asleep I was going to draw on her too. Well, for the boost, they put a big circle with magic marker on the spot and I laughed, told DW I could have did that with the marker. Glad you get a little break before at the CBR! Our therapy is tickets for the Nebraska Womens Volleyball team.

Since the lymph nodes were removed, I've been wearing camisoles when not in public. Today is the first in not in pain under my arm pit. The back of the arm doesn't feel that great. But it figures, I start feeling good and radiation starts. Last time I felt back to normal after the lumpectomy, I ended up getting the 2nd surgery. Don't get me wrong, I'm very glad I'm feeling good going into this rather than having the horrible pain I had last week.

 

[luvmarypoppins]

Linda - saw your candy post. I have a few bags of stuff left even after 44 trick or treaters, of course the ds are calling dibs on most of it except the kit kats!

Well the treats just keep coming around here - I liked the new dr. yest. She is really young, is not test crazy so that is a plus, only ordered a diabetes and cholesterol blood test which my endo does not do. Her one bad habit is she talks really fast and flys around the room alot like Tinkerbell, lol. She did give me her card and she is also responsible for training the residents in internal medicine. I got a flu shot and then also the mammo script so after talking to dh I will schedule that.

And my dh opened an e mail that informed all employees that in order to avoid layoffs we are giving you all a 1% raise this year, yup I bet with the cost of healthcare that will turn into a negative number for everyone.

 

[lovethattink]

Yesterday was a regular radiation day and a simulation for AccuBoost. Today, I officially start AccuBoost. Being claustrophobic isn't making this easy. The tech said yesterday to anticipate 45 minutes in the mammogram machine with breaks only to change the position of the machine. Actual AccuBoost radiation is only 5 to 10 minutes. The rest is waiting on oncologist and physicist approval.

Anyone else have AccuBoost? Any suggestions on staying calm. Deep breathing is out of the question. Tried that yesterday and there's not enough room for a deep breath.

I'm sitting, so that's good! There are tv sets, but the volume was too quiet to hear. I'll ask today to have the volume raised so I can hear.

 

[luvmarypoppins]

How is everyone doing? Wishing you all a Blessed Thanksgiving (a little early) Thankful for all the ladies here!

This week I hopefully will schedule the mammo if they can do it this sat. I have to work around dh schedule.

Well dh and I are making our annual christmas trip to Disney Dec. 12-17. We are staying at the Swan. The deluxe epcot resorts even with an ap discount are just too overpriced for our budget these days. Made some adrs. Not too much to pick from but we are doing Rose and Crown, LTT for dinner before MVMCP, 1900 Park Fare (wanted to see the christmas tree and gingerbread house and didnt want to make another extra trip for this)., Via Napoli not thrilled with that one but it was a time that worked so far and then Captains Grille for breakfast before the candlelight show seeing Jim Cavezeil. I asked dh who do you want to see when we are there Meredith Viera (Who we have seen before) or I told him Jesus (he asked who Jim was and I told him he portrayed Jesus in the Passion of the Christ, so dh said lets go with Jesus. I picked the breakfast because it was cheaper than lunch. Lunch started at like $50 a ticket and the breakfast was only $27. Hopefully we can also walk by and I can hear some of Robby Bensons narraration, oh the voice of the Beast! He should be great too.

GAGWTA