Dis Breast Cancer Survivors Part IV - GAGWTA

[robinb]

Bummer LMP . You don't want to mess with blood clots. I hope you can get it taken care of soon {{hugs}}.

 

[Sha]

GAGWTA Good evening ladies!!! Hope you are all doing well this evening. I popped on after having to do a search to remember what the disboards site was. LOL new computer and just haven't been here. Then to see if I could remember my password bigger LOL

Just a shout out to you all that I still think of you all. I know a few are on my FB page. I wanted to come to research something on another thread and my first stop was here. Doing ok and Mom is too. Oh! I have a kitten... too cute... and 3 days after she came to her forever home... gave me 3 more kittens! OMG they are the best therapy! 2 boys and a girl. I'm still with R and he wants to call the girl Gumbo. Go figure! This started before we knew if a boy or girl. Love him most days. xxx LOVE Y'ALL!

 

[luvmarypoppins]

Sha - good to see you and glad to hear your mom is doing well and about R. too.

I am bored sitting here with my leg up. Well that is what they told me to do. I walked to the mailbox but felt a sharp pain in my leg. I see the vascular surgeon next thurs. And now they want me to see someone in internal medicine because its so long to see the surgeon, so I am going to see a dr. there on Mon. I told them there was no way I was seeing the dr. I had before as I didnt like her personality at all. I dont want to feel aggravated when I am already feeling like crap. So I dont know who I am seeing. That is Mon.

Dh called me from Calif. and has run into some problems, so he will have to spend time at work getting that fixed next week, so I guess its all for the best.

GAGWTA

 

[Sha]

Aw LMP! feel better! and do what they tell you. I know you will turns out I'm going to be at WDW for part of my bday after all. Was hoping for some beach time but that isn't quite in the budget. I don't have any access to someone with a place or anything that is in my minimal budget with a stay to see R too. Friend coming to spend time there with me. Hoping for sunny days! I need it.

 

[Feralpeg]

lmp, so sorry to hear you had to cancel your trip, but DL isn't going anywhere. Take care of yourself!

Good news! My friend, Darlene, is doing great. The margins were clear and no lymph involvement. She will not need chemo or radiation.

 

[tazdev3225]

LMP sorry you had to cancel Disney but clots are nothing to play around with. Hope you are feeling better soon.

My dad started chemo this week and is now on house arrest. The drs. want him staying away from crowds. He has 2 more rounds of chemo and then a brief rest. After that comes the surgery and it sounds like it's going to be rough. The surgery alone is 4-5 hours and then there is a long recovery time. My parents celebrate their 60th anniversary right around the time this should all be over so my brothers and I tried to plan a surprise party. My mom wanted to plan her own party so I had to tell her. She's actually happier letting us throw it and I gave her a few details today. She said at least this time she will be dressed properly. For their 25th I gave her a surprise party, my dad was in on it but he forgot to tell her to get dressed nice. She showed up in old pants and a sweatshirt. I'm just glad that I can give them this to look forward to at the end of all the treatments.

 

[Dancind]

Hi all, I got back from Portland yesterday and had biopsy this morning. Biopsy was not nearly as bad as last time, the doctor at my new place was so much nicer and gentler. Well, that's over with anyway.

Portland is a fun place to visit. Stayed downtown in an Airbnb. Both it and my DD's place are on the streetcar line, so it was easy. But walked a TON. Felt like I was in WDW but not quite as hot. Fed her a lot of good food, cheered her up, and even found her an apartment. Supermom!

LMP, do as the doctor says. Hope you can get that taken care of really fast.

Peg, glad your friend is doing well. I am not familiar with Chek2. Have not done gene testing, but I guess that is coming up.

Lori, let us know how it goes. Testing is not fun, but peace of mind is worth it.

 

[luvmarypoppins]

Diana - glad you got to spend time with your dd and glad the biopsy is behind you now. Wishing you all the best

Peg - glad to hear your friend is doing well

tazdev - wishing your dad all the best. The party is wonderful to look forward to.

Well I ended up back in the er on sunday. I was having blood in the urine and it freaked me out. Also my stomach and my L side in the back hurt, so this time they did a ct scan of the kidneys and lungs to make sure there were no blood clots. They had a prob with the iv and now I have a nice giant black and blue. I had to have 3 of them. So today I went to the internist. I found out why I couldnt find the drs name on the physician directory listing She was sweet, but a resident. Then I also saw the attending supervisor of the residents. I was a little pissed, I feel like I was baited and switched. I also didnt agree with some things she was thinking but didnt want to get into it with her. She was talking about changing the med. I said I always have the worst side effects etc. She couldnt understand why seeing the vascular surgeon was a priority and she said I should make seeing the urologist a priority. I told her I never had a problem before like this, only noticed it once I took the med and notice it stopped when I didnt take the med. like when I was in the er and didnt have a dose and prob last night when I forgot if I took it or not).

So next week they said just go to the lab for urine and blood tests and see them the end of the month along with the urologist which I have appts. before and everyone seems to be thinking cystoscopy which there is no way I am getting done unless its absolutely positively necessary. I am just so sick and tired of being poked, prodded, any invasive procedures etc.

Sorry for the wine. I guess you can all have some cheese now, lol!

So thurs. its the vascular surgeon. Another day, another dr. sigh.

GAGWTA.

 

[robinb]

Diana, did you get your biopsy results?

LMP, do you go to a teaching hospital? I do sometimes and I know that I might get a resident. Did the attending agree with the resident? In any case, it sounds like you were uncomfortable with her advise so I would request another doctor in the future. Good luck with the vascular surgeon!

 

[Dancind]

Yes, it's lobular this time. So I guess it's a new one. It's small, surgery coming up in a couple of weeks. Trying to get to an OK place about this. Poor husband is the only one around to incur my bad mood.

 

[Pea-n-Me]

Dancin Glad it's small. I like small. I'm sorry you have to go through this again.

 

[tigercat]

I am not sure if I can post this here. I haven't read the whole post..wow a lot of pages. I am 59 yrs old and just found out that not only my Mum had breast cancer (as well as colon cancer) but several of her sisters, her Mum, her grandmother and Aunts had breast cancer as well. Several of them also had colon cancer.

I had told my Dr. about my Mum and said that I thought one of my Aunts had breast cancer as well but she didn't think it was anything to worry about. Last month when I was at the Dr.s for something else I asked again. All of a sudden it was "oh dear we better get you checked out" so I am going to a genetic counselor. I found out about all the rest after the appointment was made. It seems that the rest of my sisters knew but they had thought I had been told as well. I wasn't.

I had my 3rd mamogram in May. The other two were many years ago. I don't know what a genetic counselor would do. Is there anyone who can give me some info on it? Also, I hear there is testing you can do to find out if you have the gene or not. Is it worth knowing? I found out that my 4 sisters have decided to not know. If you do have the gene what does that mean?

If this isn't the right place for this please let me know.
tigercat

 

[Pea-n-Me]

Sure, it's the right place. We talk about everything here.

Going to a genetic counselor they will assess your risk for getting the disease (sounds like it's high) and talk to you about taking preventative or early/additional screening measures. Gene testing is bloodwork. New strands of DNA are identified from time to time, which means additional bloodwork to further test. (My doctor told me about 10% of people previously negative have tested positive for new strands. It'll probably be more going forward as they learn more.) I've had the testing done but I'd already had BC. (Mine was negative.) But as new strands are identified, my doctor tests me for those, too.

There used to be a poster here who always gave out this link. Here, we tend to think knowledge is power.

http://www.facingourrisk.org/index.php

Do some reading and decide what's right for you.

 

[Pea-n-Me]

lmp how are you feeling? How's your leg?

Linda - will your ds play baseball in college?

idk. The coach of the college he's interested in is coming to watch him play this summer. His course of study may not be conducive to playing during the school year, but if he doesn't, there are are a lot of options around here for summer play for college students. We'll see. He had some good high school moments this spring. Summer season starts this weekend, and he's looking forward to it.

 

[luvmarypoppins]

Diana - I am so sorry you have to go through all this again. My thoughts and prayers are with you

I am missing Cheryl and Laurie and Smilie posting. Hope they are both ok.

Well I went to the vascular surgeon. I saw his np first. Also it was old times day as dh and I both saw the nurse who works in the surgery center and we both had her. I mentioned my old stomach surgeon and she laughed like that is a blast from the past. We both like her. She did my vitals. The np wasnt even go to let me see the surgeon!!! WTH!! I sure bet they were billing my ins. company for that. She did say he looked at my doppler study. He says - I dont know what you are doing here. You dont need a surgeon. But I know the er told you to come here. He said to come back in 3 months for another doppler and recheck. Ask him about my blood in the urine which surprising has only happened now when I dont have the compression stocking on right when I get up in the morning. So he feels that I am part of the 5% of patients that will have that side effect while on the medication., oh gheesh. So tomm. is more blood and urine tests ordered by the resident. They told me to call for an urgent care visit and based on those results I will see yet another on call dr. on thurs. or friday and we will discuss about the med since its up on the week end and I will need to refill it or switch.

This compression stocking is so hard to get on. There is no way I can do this so the ds will have to help me. I dont know how anyone could do this themselves. Ds said the nurses aides do it in the hosp. for the patients. But it is helping me leg feel alot better for sure. Even the guy at the pharmacy said, wow your calf is really swollen. yeah, thanks for the reminder!!

I am thinking to just keep the med as my body is just so sensitive to all kinds of meds, Linda, remember my norvasc side effects?

h leaves for China tomm. He will be gone 9 days. Last time I think it was 2 weeks. I am used to it, but I am still uncomfortable with him going since I am not feeling all that well. Well I am sure it will be nurse ds3 to my rescue if need be.

GAGWTA

 

[luvmarypoppins]

So quiet around here. Hope everyone is doing well.

My tests came back great. I didnt even have to go in and see the dr. Good, saves me a $30 copay. They are decreasing the blood thinner dosage. They already said and so did the vascular surgeon it can take from 3-6 months for the clot to go away, gheesh! So I am wondering if I have to stay on the med that long???

People from church have been calling and offering to cook us meals or go grocery shopping etc. Such sweet people for sure.

Ds1 went on an interview today and maybe another on friday, so that is good.
Ds 3 has had enough of the nurse manager where he is . She just picks him apart for everything. The other staff said he should just get used to her and she is a word I cant type here (their comments to ds). So he applied to the univ. hosp. where I go and he has an interview on thurs. Yippee!! He actually applied for like 5 jobs, so he doesnt know which one it is, mostly medical or cardio thoracic. It would be the night shift, but he would be happy just to get out of where he is.

Got a few e mails from dh. I think he will be glad to get home too.

GAGWTA.

 

[smiley_face2]

LMP....thanks for thinking about me! I feel terrible about being away for such a long time....and I was supposed to upload our trip pics a month ago! No excuses other than having 2 bouts with a flu/chest infection thing that left me wiped!! Trying to get some major work done in our back yard....It has been neglected for literally 4 years now since our sons passing. We had someone come for a couple of days and do the really heavy cutting, moving hauling away, now we are left to pick away and make it nice again. We want to get it done by July 10 as that is when all 4 grand daughters will be coming to stay again! hurray! Been busy helping daughter with her 3 little ones too.... little Ava is so precious!! I just went through the anxiety producing period of having my 6 month scan and blood work, and I am very happy to say things are still clear, and my tumor markers went down again into the completely normal range so I was doing a happy dance for that!
I sure am sorry you are dealing with this!! From what I have heard it is very painful! and dangerous so you do need to do as everyone has said and take it easy!! I am sorry the Disney trip had to be cancelled, but that just means there will probably be something else new to see when you get there again right!! and gives you more time while you are sitting with your leg up to do military precision planning like I do! but it still hurts at the time I know!
Dancind...Diana....that just plain old stinks!!!! I am super glad it is very small, but it doesn't take away from the fact that it is there. We all live with that fear either at the front or back of our minds depending on how long it has been since the last occurance. But it is always there. My husband also gets to deal with my anxiety, anger, and tears when things happen. We are lucky to have them aren't we?! I will be thinking about you and praying for you, for your surgery to go perfectly!
Now I only read this last page of posts, and had to stop and reply to you 2 ladies before anything else! Now I am going to read back and see what is going on with Cheryl.... did she leave on her trip?

 

[smiley_face2]

Hi ladies!

Sounds like so many of you have a lot going on! I hope it's all going well for everyone. Also sounds like quite a few upcoming/very recent trips. Looking forward to pictures!

Thought I'd post my most recent CT scan results.....overall, about as good as it's going to get, so we are pleased with that. CT again shows slight progression, but nothing all that major. Tumor markers again went up, this time quite a bit, so lots of activity there, but for now anyway I'm going to be staying on my current treatment plan of hormone therapy......it seems to be working just about as well as the last chemo was/wasn't. And I feel just soooooo much better, and to me, that is what is important. My motto is quality over quantity. The fluid drain I had inserted is working well, output is about the same.....nice to be able to tend to it at home.

Of course there is a new problem to throw into the mix (cuz, you know, just in case I was getting bored!). Seems I have quite a problem with the circulation to my feet, toes specifically. They are always a lovely shade of red/purple and cold! I'll be getting an ultrasound to hopefully determine if I have a problem with a vein, or if it is chemo damage or whatever.....soooooo, never a dull moment!

I'm still in the process of planning our Cali road trip - I'm so excited about it! Smiley, we will be spending a few days in Cambria, and then the Santa barbara area, but we will certainly stop by Morro Bay on the way.....maybe for breakfast? Let me know if you have any recommendations!

Forgive me for not responding to everyone individually, just very tired tonight. I do read and keep up with you all, and love hearing everyone's updates!

GAGWTA!!!!!!!

Hey there Cheryl! don't know if I have missed your departure date? Morro Bay is for sure worth a stop, drive right down to the waterfront, Embarcadero street. if you get there early, there should be lot's of places to park. We are not breakfast people, so never went to a restaurant as our hotel offered a small breakfast. Sushi on the other hand.... a place called Harada Japanese restaurant. we ate there a couple of times, and I would almost get in our jeep and drive all the way there just to eat there again!! lol!! there is a little hut right on the waterfront called Lil Fish Hut....it is a take out place linked with the Harbor Hut restaurant. We ate lunch there a couple of times, their deep fried shrimp and oyster sandwich were also unbelievably good! Lol!

Our company while eating at The Lil Fish Hut:

The Rock at Morro Bay from the piers on the Embarcadero:

The beach at Morro Bay:

Sunset from our balcony in Morro Bay....we stayed 5 days here and I wish it could have been more! We will be going back again next January!

Miles and miles of sand dollars!! haven't ever seen anything like it!!:

We got one of the cheesy photo's from Hearst Castle this time! lol...:

Orange trees at Hearst Castle, this is the best part of being down there in January, the beautiful weather and flowers and oranges everywhere!!

Purple sand beach in Big Sur. Amazing. this is where we spent the anniversary of our sons passing. yes that stream is purple, from the garnet being washed down apparently. it sparkles in the sun, is so beautiful!

me at Bixby Bridge:

Stunning Big Sur highway. No matter how many times we do this trip it is never enough! and having been to Hawaii last January, it struck me how much the water colors look just like there

our favorite little garage to stop at in Carmel By the Sea.

Flowers blooming in January...in Carmel By the Sea:

Best candy shop ever! I buy a little box of truffles every time we are here I pretend there is no sugar in them! LOL!

Seafood risotto at Flahertys in Carmel....the best thing I have ever eaten in my life!: we tried to have a different bottle of local wine every place we ate!

 

[smiley_face2]

the beach at Fort Bragg: and the seaglass on the beach! absolutley amazing! long twisty drive out there, but worth it to me! such a cute little town!! stayed in a cute little B&B, had an amazing dinner and another good bottle of wine... we will go back here again in January too....if nothing else than to pick up our king size pillows we left there!! I have to travel with my own pillow...and these were really good ones. They are keeping there for us! such sweet people!

suntanning by the pool...in Redding California in January. It takes 15 hours driving to get here from our house. so worth the effort to get here alone! It's the first place with the real California feel, lot's of palm trees, flowers blooming in January.... even if we could only get this far for a month in the winter would be good with me! and it's the closest In & Out burger to us....that alone is worth the drive!! LOL!! but of course just a few hours more and we can be in Disneyland...so that's what keeps us on the road all the time!! Lol!

 

[smiley_face2]

taking a break from vacation photos to show off our grand children!
This is our newest grand child, Ava. she came early only a few days after we got home in February! She is such a petite little girl! always always smiling, just like her uncle Kenny used to

This is Ava's mommy on the left...her aunty, our youngest daughter is holding her

Ava's mommy, our middle child, at her baby shower. That cake was amazing!!! fresh strawberries inside...

Ava dressed up like a mermaid.... she also got dressed up as pebbles from the flinstones, and a ballerina...lol

our 4 grand daughters came to stay for spring break in march and as you can see the weather here has been really mild this year. we got to play at the park and beach a lot! this is all of our grand children except for baby Ava

our 2 oldest grand daughters, when we were out for a walk. the oldest, looks exactly like her dad at that age. In fact if you look at his picture, in my signature pic, that was taken on his wedding day, you can see how much she looks like him. He was so handsome. It is both absolutely heart breaking for us, and an extreme comfort. It is hard to live with the duality of emotion.