Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Cheryl - Absolutely beautiful pictures! Love seeing other parts of the country. I bet you didnt want to come home!

smiley - so sorry you are having so much pain with your esophagus issues. I hope the new med will work for you. I would try anything first before surgery.

Lisa - thinking of you

I have lots of issues and acid with mine too. They scoped me and said they see the esophagus is not good from the acid, at least the part they could see. I am on the max of one med right now. Its the only one that works so far that is a prescription. I here you about the side effects. I ask now what side effects can I expect? etc. And of course I always get the worst side effects

Linda will remember my little Norvasc thing that almost ended me up in the hospital not too long ago. It was horrid.

Well Mission ADR's accomplished. Everything is set for the nov/dec trip. Only problem I had was trying to get Tonys in MK. Two nights and nothing. So hopefully I might be able to get the new Beast Castle one night. We are eating at the same ole, same old - Brown Derby,LTT (twice because I couldnt get Tonys), Plaza, Cape May, Via Napoli, Chefs, Grand Floridian Cafe (gotta see the gingerbread house), and Le Cellier. Only new place (and I am doing this for dh) Teppan Edo, not my type of food so we shall see. Might change that depending etc.

I am exhausted. We went to decorate again today from 10:30 till like 3. Last night we bought some of the stuff for the lady. Now I have to print out more material for her. I am trying my best and ds wants me to help him do his material too. I feel like 3 teachers at once.

Need to make a blood test appt. My back has really been bad along with my R hip. Hmm, my mom had 2 hip replacements by my age I think so I am sure I will end up like that too.

GAGWTA. Blessings to you all.

 

[snappy]

Smilie, I am so glad you do your homework so to speak on the meds that are prescribed. You are a very wise person.

I am glad the new med took care of the pain so quickly and hope you have continued luck with it.

MaryAnn, glad you were able to get most of the ADR's you want for your November/December trip. You have a lot to look forward to trip wise this fall/winter.

You need to take care of yourself so you can enjoy every minute!

DD22 interviewed for yet another place this week, she is still waiting for the next step in the prices for the internship. The interview Wednesday was at a cool little business located in a carriage house (?) two streets from Union square called Haven's kitchen, cooking school, event locations, gourmet food, spices, coffees, teas and upscale table top items retail place. She said that place was rocking for a Wednesday morning!

Sure sounds a lot more fun than accounting!!!


What are everyone's plans for the 4th? We will be getting together with my New Orleans friend and her SO. Can't wait!!!

 

[PatsMom]

Hello ladies!

LMP - glad you got an ADR for the Candlelight Processional - I wouldn't try to see it without the package! I love that show and since we've been going for F&W I haven't been able to get to Disney at the right time of year. And we go in January when my daughter is on college break so it would make two trips very close together. Hope you have a great time and that the weather cooperates. Whoopi should be an awesome narrator.

CherylDan - Aweseome pictures. My niece just moved to Anchorage last year and I am so looking forward to visitng her when I get a run of good health! Just waiting for that to happen.

I am off to the rheumatologist next week. Still looking for the anemia cause. Now that are looking at lupus, polymyalgia rheumatica and rheumatoid arthritis because of my elevated C Reactive Protein and sedimentation rate. All of those cause inflammation which could be the cause of the anemia. I feel like I'm getting back on the merry go round of testing again!

Hope everyone is doing well. For anyone affected by the fires in the west, my prayers are with you. Those fires and the rains in Florida are just scary!

 

[CherylDan]

PatsMom, I hope your testing goes as well as it can, and that you get some answers sooner rather than later.

Laurie, your plans for the 4th sound fun! We dont have any plans whatsoever.....might go see some fireworks somewhere, but that's about it. Sure sounds like your DD is making a lot of progress in a short amount of time!

LMP, your class must be starting soon? Will you have a lot of kids? Your ADRs sound good. Do you ever get to DTD? We love Raglan Road for dinner. It's casual and fun. And the food is wonderful!

Smiley, I'm glad your new med is working for you. Sounds like your new doc is an improvement for sure over the old one! I had to laugh about the shelf of meds. Not much longer now before your trip, I bet your DGD is really excited!

I saw my oncologist yesterday....my CT scan shows no change, so that is certainly good news. I wont have the new tumor marker numbers for a few days. Last time they were up to 51 from 35 (the high end of normal). So he will call me with the results, and decide what/when to scan next. I'm not having any symptoms, so that is also a good thing.

GAGWTA!!!

 

[CherylDan]

Thanks for all the kind feedback on the pictures, here come some more! LOL


These are from Juneau. I had no idea, but even though Juneau is the state capitol of Alaska, there are no roads leading in/out of town - only way to get there is by plane, boat, or birth canal. LOL, our tour guide got a kick out of telling us that.

Mendenhall Glacier State Park. We also went whale watching in Juneau, and saw whales jumping out of the water, as well as other wildlife, but we were never able to capture any pictures.

These are from a few days later when we were docked in Skagway. We took a small boat to Haines and rode 4x4 mules up the Takshanuk Mountain. Beautiful views!!! We went as high up as the Sears Tower. Great day.

 

[snappy]

Oh my goodness those pictures are amazing.

 

[Sha]

Hi ladies... so much has been going on. I had a good time off when I took mom and surprised her with a trip to the Biltmore. Then we went home to Virginia for the rest of the week. I spent my birthday there and we also did a surprise early birthday for mom with her brothers and sister.

thank you for the birthday wishes.

I have some news about Mel. She is going back in for surgery this coming Thursday. Her IBC reoccurred. I learned that unlike other cancer, it doesnt go into remission. It just goes dormant. She was without evidence of disease NED, for awhile, but it raised its head again. Please keep her in your thoughts and prayers. For whatever reason, this one has really bothered me. Here is her latest.

http://www.warringtonguardian.co.uk/yoursay/blogs/melanie_oneill/9792214.Here_we_go_again/?ref=fbrec

Laurie... thank you for registering. Laurie is joining up with me in New Orleans for the walk in October. R was going to be there and is registered, but the date was bugging him. That is the weekend him and coworker and other friends go to an away game. Sorry that he isnt able to be there with me, but I will spend part of the week with him before hand.

 

[minijeanie]

cheryl: omg those pics are so awesome. I looked at them twice. So glad you are enjoying

LMP: whew your adrs done and I think good thing to maybe change it up a bit. Have you ever eaten at yachtsmen..good steak there as well. I had both hips replaced. It took me 10 yrs to do the first one and 1 year to do the second...If you go down that road it really is not all that bad. Nothing beats no pain!

patsmom: good Luck

smiley_face: so sorry your having such issues but glad one drug is working. Hope it continues to do so

Back from my whirlwind wedding. In 36 hrs.. I drove 14 of it..OUCH...Boy weddings so different in PA than they are here in NJ

Curious: tell me about your typical wedding in your state/or hometown


For me: It normally is in a restaurant or catering hall. You have a 5 hr open bar, DJ and an enormous cocktail hour. Several stations where they cook pasta, Sushi, fish, chinese etc. Then there are servers walking around with cocktails on their trays. THere usually is big ice sculpture in middle of it all. By the time you waddle to the dinner hour you are stuffed. Dinner usually is choice of meat, fish or chicken accompanied by either soup or salad, potato and veggie.
For dessert it is wedding cake and maybe some ice cream. Some brides choose a flaming dessert and others choose a huge viennese table. It is TOO TOO Much food and WAY to expensive. Hope my daughter does destination wedding lol

 

[snappy]

That was a wonderful surprise for you mother, Sha. Glad you were able to make the trip home.

I am sorry to hear of Mel's recurrence. IBC is a tricky one and I am sorry she is facing it again.

Her blog entry was very moving. Thanks for sharing it, and please keep sharing her entries with us.

I am excited to be on the team. I think it will be amazing. Just sorry it took me so long to focus and sign up. October is a very cool time to visit south Louisiana. I am glad you will be here. Can I wear my same t-shirt from the Orlando race last October?

Gotta love the team name ladies, Hakuna ma Tatas!

 

[luvmarypoppins]

Cheryl - loved your pictures. Especially the one with your BFF (best furry friend, sorry couldnt resist). It sure is rugged there.

Sha - sounds like a wonderful surprise for your mom. Sorry to hear about Mel. I read the blog too. It broke my heart. But I know she is strong and will fight her best.Thanks for sharing with us

minnijeanie - I hear you about the weddings. Same here. We havent gone to one in ages. Thought we were going to be invited to one my son was in but were not. Its something that really hurt me. I still talk to the mom though. I did see pictures from our one friends dd who got married in Penn (where she lives now, It was really, for lack of a better word, sparse.

Also saw pics from another friends dd's wedding in penn. They had it in the grooms backyard gazebo. Very casual.

Laurie - no plans for the 4th here. Ds20 has to work, so we will just grill.

Lisa - hope you are enjoying our time with Meg.

Linda - I am sure you are enjoying your pool. Just curious, does your hamster squeak? Ours is so quiet.

We worked on the room again thurs. Yest. I prepped all the other ladies material who ds22 is helping, now need to work on more of my stuff and promised to help ds20. My head spins.

Need to squeeze the blood test in too. Dh told he will be traveling lots. Oh well.

Just found out today a very sweet couple from our church is moving. I am so sad. She is one of my spiritual moms. She is the one who arranged all the meals for us. This is the couple who ds22 also dog sat for. They are moving to NC soon I guess.

GAGWTA. Might be doing my room tomm again.

 

[Sha]

Cheryl sorry I didnt say so before... the pictures are beautiful. I love the first one. of the last set. The glacier and ice floats on the water... one day.

Laurie, yes you can wear the same shirt. I may have new ones but will still say Team Hakuna Ma TaTas. I hope to get with my neighbor to work on the design. R suggested that I and whomever is with me, stay at the Sheraton or Hilton on Canal. I so wish he was going to be there though. Be odd to be in LA and not with him.

2 weeks..... just get me through the next 2 weeks. This week is going to be slammed. And with the holiday, and having to get permission to work on the holiday.... I am sure they will okay it, though I wouldnt mind to have the day off. I need the extra as I am planning to pay for the dinner for everyone at Cali Grill. Oh I did book the Illuminations fireworks cruise.

Lisa... how are you doing? How was the weekend with the guys being away and you and Meg having a girls weekend???

I know I am missing a lot. I havent read through everything yet. I am in the middle of laundry and I want to clear out some paperwork that I need to have shredded. I am taking it to work since its their papers. Let them do it ya know?!

Ill be back... and will catch up.

 

[luvmarypoppins]

Good afternoon ladies

Hope everyone is doing well

Enjoy your day tomm. - whatever you have planned.

Here they said its probably going to rain or storm. Hmm, guess the outside bbq will have to move inside, oh well.

Dh just informed me he may have to go to MN on mon. when I scheduled the sono. So not happy about that. Now I will have to drive, after dealing with the kids for over 3 hours, look for a parking place which is non existent. I will have ds22 go with me. They have wheelchairs inside, so I think I will have him get me one if we have to park in neverland.

On to the blood test scheduling.

GAGWTA.

 

[Pea-n-Me]

I have some news about Mel. She is going back in for surgery this coming Thursday. Her IBC reoccurred. I learned that unlike other cancer, it doesnt go into remission. It just goes dormant. She was without evidence of disease NED, for awhile, but it raised its head again.

As far as I know Sha, that is how it works with all invasive breast cancer, not just Inflammatory BC. (And others that recur.) That's what allows there to be recurrence after many years, sometimes even 10 years or more. Probably a similar process to how the herpes virus does the same thing, as in cold sores coming and going or coming out under stress, or chicken pox turning into shingles down the road, etc.

http://www.cancercompass.com/learn/cancer-information/breast-cancer/recurrence

Breast Cancer Recurrence

No matter how successful breast cancer treatment is, it sometimes leaves behind a few undetectable cancer cells that may be too small to be seen in follow-up appointments. During remission, these cells lie dormant, or remain inactive. But if they become active and start to multiply, they can grow into a detectable tumor.

Most recurrences appear within the first two to three years after treatment, but breast cancer can recur many years later. If the cancer resurfaces after only a short period of time, you are most likely experiencing a progression, rather than a recurrence, because the cancer may not have ever been dormant.

Linda - I am sure you are enjoying your pool. Just curious, does your hamster squeak? Ours is so quiet.

Yes, Remy squeaks. Or as DD calls it, he "beeps", lol. The little guy is a riot - he sits on DD's chest every night (DH calls it "Mount Bubius" - get it?) and seems to watch her use her iPad. He'll sit there for a half an hour! I am going to have to get some video of it one of these days.

Gorgeous pictures posted here!

I have had horrendous computer issues that are still not resolved. Currently on DD's laptop but it's hard to use when it's not mine, KWIM? My usual system is disrupted. Also crazy busy and pretty exhausted.

 

[Sha]

Thanks Linda... not something they taught us in school. They said if its gone its remission vs NED which would be more accurate from what I understand now from what you shared and what I have read elsewhere now. I know that cells that are healthy can change to Ca and that sometimes there are Ca cells left... but this just seemed so different that that of regular because it doesnt cause a tumor and is so aggressive. Makes me think of that flesh eating bacteria, not knowing if they got it all.

ONTO a better topic: what are the plans you have for the 4th? I am working, but kind of had to as I have a couple patients who have wounds to be treated and then 2 others that I didnt want to pass on to someone else to do. Im kind of possessive with my patients.

 

[ols386]

Is it fairly normal to get called for a second mammogram?

I went last week for my annual, and then got called back for a second mammogram. Went today and had the second one.

When the technician did the second one today, she mentioned that they were magnifying the images.

I'm not really scared, but ever since I got the call to come in for a second one, it's almost constantly in the back of my mind.

Any input would be appreciated.

 

[Pea-n-Me]

Is it fairly normal to get called for a second mammogram?

I went last week for my annual, and then got called back for a second mammogram. Went today and had the second one.

When the technician did the second one today, she mentioned that they were magnifying the images.

I'm not really scared, but ever since I got the call to come in for a second one, it's almost constantly in the back of my mind.

Any input would be appreciated.

Yes, I think it is common. And scary. Generally two radiologists read them before they're signed off on. Sometimes there is only one there, and another reads it later. Or they're backed up and both can't read it right away, etc. Does your center do digital mammography? There is also what's called a BIRADs score. You can read about it here. You can ask what your score is, but remember it's just an educated guess by that particular radiologist (and another who agreed). Good luck and let us know how you make out.

 

[Pea-n-Me]

Thanks Linda... not something they taught us in school. They said if its gone its remission vs NED which would be more accurate from what I understand now from what you shared and what I have read elsewhere now. I know that cells that are healthy can change to Ca and that sometimes there are Ca cells left... but this just seemed so different that that of regular because it doesnt cause a tumor and is so aggressive. Makes me think of that flesh eating bacteria, not knowing if they got it all.

I know what you mean. Much of what I know I learned myself on my own because it affected me. I think the terms are confusing, and a lot of cancers can recur, even those thought to be in "remission". I think the NED term sums it up better, but it's still confusing. Breast cancer used to be thought "in remission" after 5 years, but we know now that it can recur later. I've also known a lot of people who thought they had new cancers but those were probably recurrences of old cancers. Still a lot of misinformation and misunderstanding out there, unfortunately.

 

[ols386]

Yes, I think it is common. And scary. Generally two radiologists read them before they're signed off on. Sometimes there is only one there, and another reads it later. Or they're backed up and both can't read it right away, etc. Does your center do digital mammography? There is also what's called a BIRADs score. You can read about it here. You can ask what your score is, but remember it's just an educated guess by that particular radiologist (and another who agreed). Good luck and let us know how you make out.

I'm not sure if they use digital or not. I'll check out the link you provided.

Thanks for the input.

 

[snappy]

Great posts, Linda.

ols386, i hope you learn very soon that it was just an abundance of caution by the radiologists reading the first mammogram.

Please let us know.

I was one who asked for my BIRADS report after my mammogram. My sister even had a higher score than mine, and she did not have breast cancer, her calcifications were just more suspicious.

The biopsy is the definitive test, at least as of now.


As Linda said, please let us know how you are doing. I can't think of anything else right now, but I would definitely follow up with a phone call tomorrow. My experience was that when I had my first and all succeeding "diagnostic" mammogram, or as your tech described, the magnified one, the radiologists always review immediately before you get dressed and leave the facility. After my first diagnostic mammogram, I was called in and talked to one of the radiologists who explained about non-invasive biopsies as in the stereotactic core needle variety. I called my GYN when I got home and had the name of a breast surgeon the same day although I did have to wait to see him as he was out of town for a conference.

This can be a process of steps. Try to relax if you can, but I would as I said call tomorrow. I am a bit OCD so I asked for a copy of the BIRAD test. I am not sure that was necessary, looking back.

Hope to hear good news about you soon.

 

[smiley_face2]

again beautiful pictures Cheryl!
So we have added on another 2 days to our trip! this is the vacation that never ends.... lol. We are stopping and staying in Gilroy for the Gilroy Garlic Festival, and then stopping and staying in Sacramento. Going to explore the old town it looks so amazing online! right out of the old wild west, you expect to see Miss Kitty and Matt walking on the board sidewalks and you can get Sarsparilla for a quarter! lol.... probably going to fall far far behind all the posts here, we won't be home till July 29 or 30. But I will try to peek in here on my iphone....data is waaaay too expensive for me in the US though. Wifi in the hotels, but then you are so busy and just want to go play! Hope everyone had a good 4th of July!