Dis Breast Cancer Survivors Part IV - GAGWTA

[minkydog]

Remind me (sorry, helping kids w college applications so been a little preoccupied) - you had the port put in, then were hospitalized with an infection, was that from the port? You are going to do chemo but haven't started yet? And radiation too?

Had the port placed 10/19, first chemo 10/20. Neulasta 10/21. They cultured all the usual suspects, but nothing came back positive, so they really don't know what the source of infection was. It responded well to antibiotics so they decided not to remove the port. The good news is that my numbers are all back where they should be today.

I'm not sure whether I'll have radiation or not--there is still some talk about doing bilateral mastectomies after chemo is finished in Jan. Gotta get through this stuff first.

 

[Pea-n-Me]

Ok, got it, thanks for the update. Chemo knocks you on your butt. I sort of felt similarly to you - that I was used to working hard, had little kids to take care of, they needed me at work, etc. At some point I crashed. Figured out, kicking and screaming, that this is one of those rare times that I had to give in to it. I had to do some work with a social worker at my support center to really get it knocked into my head. I think it was probably then that I started to heal a bit. But even that took a lot of work. It's a difficult time. Don't worry so much about work or about anybody else right now but you. I know it sounds crazy, but it's really your time right now. If you don't heal, physically/emotionally/spirtually, it could be more difficult. I know you said at the beginning that you've been through a lot and this is just one more thing, but it really does take a lot out of you, so you have to give it the respect it demands. The effects of chemo are cumulative, too. So more and more it causes that nasty feeling and chronic fatigue. Even if rest doesn't make you feel much better, your body needs it. So please, I know you're a warrior, but this warrior is telling you you really need to take it easy.

 

[minkydog]

Ok, got it, thanks for the update. Chemo knocks you on your butt. I sort of felt similarly to you - that I was used to working hard, had little kids to take care of, they needed me at work, etc. At some point I crashed. Figured out, kicking and screaming, that this is one of those rare times that I had to give in to it. I had to do some work with a social worker at my support center to really get it knocked into my head. I think it was probably then that I started to heal a bit. But even that took a lot of work. It's a difficult time. Don't worry so much about work or about anybody else right now but you. I know it sounds crazy, but it's really your time right now. If you don't heal, physically/emotionally/spirtually, it could be more difficult. I know you said at the beginning that you've been through a lot and this is just one more thing, but it really does take a lot out of you, so you have to give it the respect it demands. The effects of chemo are cumulative, too. So more and more it causes that nasty feeling and chronic fatigue. Even if rest doesn't make you feel much better, your body needs it. So please, I know you're a warrior, but this warrior is telling you you really need to take it easy.

Thanks, Mom. I know you are right.

 

[SirDuff]

A quick update. They weren't able to visualize the spot enough to either due a biopsy or rule it benign. I will have an MRI guided biopsy later this month (it has to be tied to my hormonal cycle, so it has to wait until the third week of November). Annoying to have it stretched out, but clearly whatever it is is very small.

 

[Pea-n-Me]

We love small, Sir Duff. Glad you found us. We're pretty good at virtual hand-holding.

Glad, Minky. (And I know you're not really going to listen to me just yet - (us) darned nurses make the worst patients! ) Hang in there, and at least try to take it easy!

I had my annual onc visit and MRI last week. Everything was good. Twelve years out now. She told me I'm now at about the same risk as the general population of getting a new breast cancer and slightly less than someone with the BRAC gene. And that my original breast cancer at this point is very unlikely to return. Wow! I waited so many years to hear those words! That should be good news to you, Smiley, and anyone else who was triple negative. Knock on wood. And I had an amazing experience with an MRI tech. Long story short, last year, after my hemorrage and hysterectomy when I was tachycardic from the blood loss, I was unable to complete my MRI. The people there weren't too nice that day and I just couldn't stay in that machine with my heart racing around 150 beats/minute. So this year I was a little hesitant even though I was at a new place in a more open machine. (Negative association, I think - I've managed to do MRIs just fine for the last twelve years but after that one bad experience, now it's hard for me. Ugh.) But the two techs there made it happen for me because they were empathetic and went out of their way to help me out. One actually kept her hand on my arm throughout my entire test and never moved. I was so touched the tears wouldn't stop. It's amazing what a little kindness will do! And more good news was that I probably don't need them anymore! So, as luvmarypoppins would say, PTL! To think, my twins were just five years old when I was diagnosed, and now we're looking at colleges for next year. God was good to me.

 

[snappy]

Good to hear your numbers are up, Minky. That's progress!

It's hard to concentrate on yourself, after what is likely a history of being selfless, but take a page from that book if you can. It's your turn.

Sir duff, I was going to post the same as pea n me, small is good, anxiety of waiting not good. They are being diligent, that trumps the rest. Surgery if even needed should be minimal. But that is down the road. As Ann's DH offered a good while back (Ann is one of our original core group from 2005), try into to bleed until your shot.

Regardless, thanks for posting an update after the procedure. The above comment is not meant at all to offend, I appreciate that you are reaching out to us. Support, even this virtual type, helped me through some dark days. Post while you wait for your next biopsy, pm me if you like.

Pea n me, the kindness of the MRI unit techs touched me. I am thrilled for you about where you are after 12 years. As you know, my 12th anniversary is coming up, in April 2016. As challenging as it has been for us to relocate mom and deal with getting her back after her fall a month ago, just think if I had not been here these last 11 years to help her. She remains making progress. Yesterday we had a very satisfying meeting with the executive director of the senior community where she moved to in August. He is stepping up to make some needed changes and offered a lot. I was very apprehensive about the meeting and invested a lot in drafting an email to him to frame what was important to discuss. It turned out having mom at the meeting, a suggestion my brother made in the 11th hour, was a stroke of genius. As my brother predicted, she was smiling, charming, very lucid, asking excellent questions, and interjecting comments appropriately. Just glad it is over. Best part is that mom is happy with the outcome and she was a part of it.

I will take away today from reading here the importance of kindness. I need to incorporate demonstrating kindness in every part of my life, but particularly work right now. Your story about the kindness you experienced was just the impetus I needed at this moment. It was meant to be.

I can't thank you enough.

 

[minkydog]

Oh, Pea, what good news! I would have been more than a little teary to hear that. And kudos to the MRI techs--I hope you'll send a note to their supervisor to let him/her know they have the right kind of employees.

 

[Feralpeg]

I so love coming here to good news! Congrats Pea! Small is wonderful, SirDuff.

 

[luvmarypoppins]

Finally catching up around here

Minky - hope you are resting and that the chemo is manageable for you. You certainly have been through a lot

SirDuff - sorry you have to do more testing, but the others have said that small is good so wishing you all the best with the new testing. Hang in there!

Linda - that is wonderful news from your visits!! I agree that kindness goes a long way in helping the patients emotionally for sure. Everyone here has such a business like attitude. Its like get em in, chart and get em out, sigh. Hope the application process for your twins is not too overwhelming, not to mention the costs and you have it times two!!

Peg -said a prayer for your friend John. He sounds like a real fighter for sure.

Laurie - I think some of my problem is that they took my ppi med away so without that my stomach does not control the acid and that led to my getting sick even when I took alot of tums. I was very careful to watch what I ate for sure. I only eat half on the plate anyway and usually end up giving the other half to dh if he likes what I ordered.

Well my head is spinning, I am tired and we all have some kind of cold/cough sickness that started with ds3.

All I did was come home, wash the 2 suitcases full of laundry and then get the stuff ready for the funeral and we were off again. I just wanted to sleep in my own bed.
The funeral was nice. My uncle was a captain and member of the rescue squad for 29 years and they had a special service for him and always had a honor guard all the time at the the head and foot. I got to meet my cousins dd fiance. He is a nice guy and we are going to the wedding June 10th.

I am going to be doing a dining report.

The weather was really nice when we were there. Didnt even make it to the animal kingdom but we had such a great room at the Swan that we got to watch illuminations from the room. That was awesome since we were usually so tired. The older we get the less we do it seems.

Tomm. ds1 starts his new part time job in his field finally. The other guy said he could still work part time at the factory which was nice of him and basketball starts soon for his one team, so he has 3 part time jobs. Well I guess in this economy around here you have to take what you can get.

Friday I am going to the hematologist. They will tell me the blood test results and see if I can stay off the xarelto or need to go back on it and I asked them to check my B12 level, so we shall see. On my to do list - mammo, gastro and dentist. sigh.

GAGWTA. Thinking of you all.

 

[tazdev3225]

Wow I am 3 pages behind. I need to go back and catch up.

My dad is doing good and has his sense of humor again. My parents celebrated their 60th anniversary a couple of weeks ago and I thought I would share a couple of pics
They renewed their vows also
53

A little better picture of them cutting the cake. Dad has lost a ton of weight but I guess that is to be expected

85

And then 11 days after the huge and party to celebrate my youngest daughter finally got married.
20

I am finally de-stressing. I still worry about my dad but he seems to be holding up. Hope everyone is doing well and had a good Halloween.

 

[SirDuff]

I had my MR biopsy yesterday. The radiologist could still see the spot of interest (I was hoping that when they re-did the MRI they wouldn't be able to find it), but we are still pretty sure that it is nothing. It turns out, however, that my capillaries react strongly to epinephrine (which is included with the local anesthetic used). I ended up with a large white patch with no sensation and, when I called to ask about it, was directed to head to the ER (just to make sure that there wasn't a risk of the skin dying). By the time I was seen (the radiologist called ahead, so it wasn't too bad a wait, but it was very crowded and I wasn't a high priority), the spot was shrinking and ended up completely resolving on its own. Funnily, I've been to that ER twice now - once for this (learning that I react weirdly to epinephrine in local anesthetic) and previously when I learned that I react weirdly to CT contrast. I wonder what I'll "learn" next!

Should get my results on 1-December.

 

[luvmarypoppins]

tazdev - very nice pictures

SirDuff - hoping you get good results

Minky - thinking of you and praying your treatments are tolerable

Peg - hope you are healing

I have been fighting this cold and cough thing for 3 weeks.

Wanted to wish you all a Happy Thanksgiving.

 

[Feralpeg]

Seems pretty quiet here. That's great news!

Minky, Hope you are tolerating your treatment well.

SirDuff, I know you're frustrated, but I'm so glad the area in question is small. That can't be a bad thing!

Things are hectic here, as usual, but that's okay. We are doing okay. My foot is still bothering me, but it seems less painful than before. The doctor wants to continue babying it for a bit. Okay by me. I really don't want to do surgery!

I just had a CT. I see my oncologist on 12/3. Fingers crossed everything is still good. I wish the side effects from the Tamoxifin would go away, but that's not likely and I doubt he will want to take me off the medication. In addition to the constant hot flashes, it causes a lot of joint pain. I was on Gabapentin for it, but it was causing my blood pressure to spike. Oh well, better than the alternative.

Hope you all have fun plans for Thanksgiving! Kendall, my sister and I are having Thanksgiving dinner at Raglan Road at Disney Springs. They have a special Thanksgiving meal with an Irish flair.

Christmas decorating is done. Hoping to get to Epcot and Magic Kingdom to enjoy the decorations soon. Parks are already very crowded! I went with my sister to a special cast party at Hollywood Studios last week. It was pretty amazing. They took us by bus from the Epcot parking lot to the Studios and dropped us inside the park in front of Lights, Motors, Action. They had food buffets and tables set up all over the park as well as multiple bands. It was for CMs celebrating their 10, 15, 20 etc anniversaries. Neat event!

In case I don't get back here before Thursday, Happy Thanksgiving to you all! I am very thankful to have all of you!

 

[smiley_face2]

Can't believe its been over a month since I last checked in here! read back through all the posts, prayers for those battling through chemo, surgery, and just plain sickness! Had my annual MRI last month and while the results were good hurray...I had a bad reaction to the contrast this time and had a bad bronchial spasm which was very scarey! It looks like we have to cancel our trip this January, we are having a hard time with our budget, and it would just make things too hard. Slowly starting to get ready for Christmas. Take care all....GAGWTA

 

[luvmarypoppins]

Just popping in to say hi. The thread is quiet so I am sure everyone is busy with their holiday planning and activities.

Janet - sorry you have t cancel the Jan. trip but Disney will always be there and I am sure you are listening to the voice of reason with your budget - so wise.

Minky - hoping you are managing the treatments ok. Prayers for you.

I went to the hematologist on Friday and actually saw him and not the np, although his accent and speech is very hard to understand, sigh. So I dont have any of the blood clotting factors to cause a blood clot. Some level of something is low so they are checking it again in 6 weeks but its going up, something that happens after you get off the blood thinner. Got a B12 shot too.

Our ins. is changing Jan. lst so I hope the drs. take it. Bad things are I use to pay nothing for er visits, urgent care visits and ct or mri and now with the new plan the er will be $100 as well as the mri and ct scan and the urgent care will be $50 and supposedly we will be able to get a 90 day prescription supply at cvs for one copay. I dont know all of the info yet as they havent given us the plan book or card.

Best news is that we are going to Disney on the 13th and ds3 is coming with us. He will leave a day early the 18th as he has to work. We are staying at the Swan and I booked the candlelight processional with Meridith Viera at Rose and Crown. Not too much dining left all but its practically where we ate last time. We will pro go to MVMCP on the 15th. I am sure ds will keep us up from day to night. Oh well I am sure dh will want to work so ds and I can see things then.

We havent put up our christmas decorations yet. Too much to do. I was up at 7:30 cooking for our church christmas pot luck today. I took a long nap today.

GAGWTA. Thinking of you all.

 

[snappy]

Hope everyone and their family members are well.

Peg, hope you had a positive appointment with your oncologist. How neat to get to go to a cast party.

Minky, you haven't posted in a while (like me, lol). I hope you are kicking cancer's you know what with the treatments.

Janet, yea for the positive MRI results, but sorry you had the spasm. Also, I am sorry you are postponing your January trip. I have been trying to be more conservative too, for lots of reasons.

Instead of our planned NYC trip next week, which costs big, big $$ for us by the time we book 2 rooms, take DD25 and my brother to nice dinners, and go to multiple plays. Also, I blinked, as DD25 decided to sit for the LSAT and I got the date wrong, I thought it was January 6 but it was actually December 5th. Regardless, I figured out an economical way to get to Disney next week for a few days using points. DD20 has never been this time of year, although she did go Thanksgiving week 2002, but can't remember the Osborne lights or anything else really.

MaryAnn, we are also staying at the Swan, around the same time, the 12th and leaving the 18th. Let's get together.

GAGWTA

 

[smiley_face2]

Glad to read there are some Disney trips coming up!! This has always been our favourite time of year to go, last week of November and first week of December. We like summer too. January is a nice time for us to get out of the rain, but last year it felt like half the parks were closed for refurbishment, and this January is going to be just as bad, lot's of things closing for the next year and half to build the new Star Wars land. Our dollar dropped again today too, along with the price of oil. What would be perfect is if we could afford to do Disneyland in either summer or for Christmas, then fly off to Hawaii for end of January!! Need to win a lottery! We have 3 big projects to get done here at home, so we will stay busy. We will finally get the beautiful tile I have waiting put up in the kitchen, and the beautiful new vanity that is sitting here, put into one of the main bathrooms. We are redoing one of our kids old bedrooms too, for the grand kids. Have new twin beds coming, have the paint, flooring on the way. It will be so nice for all 4 girls to come stay at the same time, and all have their own beds! the 2 oldest get their own rooms, 2 youngest have to share a room. As soon as the weather starts to improve here, by March, we will finally get our deck done too. We are doubling the size of the deck off the kitchen, so we have room for everyone to sit out there and eat too. I went ahead and got all the furniture, and a really nice sun shelter, and it is all sitting waiting for a big deck to go on! It makes me tired thinking about all of the work! Lol!

 

[snappy]

Glad to read there are some Disney trips coming up!! This has always been our favourite time of year to go, last week of November and first week of December. We like summer too. January is a nice time for us to get out of the rain, but last year it felt like half the parks were closed for refurbishment, and this January is going to be just as bad, lot's of things closing for the next year and half to build the new Star Wars land. Our dollar dropped again today too, along with the price of oil. What would be perfect is if we could afford to do Disneyland in either summer or for Christmas, then fly off to Hawaii for end of January!! Need to win a lottery! We have 3 big projects to get done here at home, so we will stay busy. We will finally get the beautiful tile I have waiting put up in the kitchen, and the beautiful new vanity that is sitting here, put into one of the main bathrooms. We are redoing one of our kids old bedrooms too, for the grand kids. Have new twin beds coming, have the paint, flooring on the way. It will be so nice for all 4 girls to come stay at the same time, and all have their own beds! the 2 oldest get their own rooms, 2 youngest have to share a room. As soon as the weather starts to improve here, by March, we will finally get our deck done too. We are doubling the size of the deck off the kitchen, so we have room for everyone to sit out there and eat too. I went ahead and got all the furniture, and a really nice sun shelter, and it is all sitting waiting for a big deck to go on! It makes me tired thinking about all of the work! Lol!

 

[snappy]

Janet, I love hearing about all your projects. You have such creative ideas! I can't wait to see pictures.

Your grand daughters will love their new digs. And you will enjoy that deck and new furniture for years to come.

 

[Pea-n-Me]

I'm sensing a theme here... costs going up and things being postponed. Seems so common now. Tough times we're living in.

I was helping a friend book a room for January and was shocked at the (low) prices we were finding at some beautiful WDW resorts. So many that she is having trouble deciding! Wish we could go....