Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

All, I don't normally post on this thread but thought I'd stop by over the passing of one of our long-time DISers, PlutoPony. I don't think she had posted on this thread in a few years, however, she and I were fairly active here through the years and we lived in the same general area and our sons were the same age and had similar interests.

I lasted PM'd with her this past December 2018 and never got a response and didn't see much activity from her, so I was worried. I was cruising Facebook tonight to see if I could find some info on her through her son's page and I saw that she passed away in June. I feel so sad. I always wanted to meet her in person but that never happened. But we shared a lot about our sons and she told me all that she had been through with breast cancer. If memory serves me, she had a fairly small cancer that seemed no big deal but it was one that apparently had a knack for spreading and she ended up having it metastisize (sp?). She knew it was back one day when she was just walking and her femur broke. She was really so strong in the face of it all and I admired her strength and how she got through it. Anyway maybe some of you knew or were in touch with her but just in case not, I thought you may want to know.

Aww, that's so sad, Christine. I definitely know the name, but I'm trying to remember if she posted here. (Does anyone remember?) I will have to search. Appreciate your letting us know. I'm sorry you never got to meet her in person, but I'm sure she appreciated your friendship here. ETA yes, she posted here in 2016.

 

[Christine]

Aww, that's so sad, Christine. I definitely know the name, but I'm trying to remember if she posted here. (Does anyone remember?) I will have to search. Appreciate your letting us know. I'm sorry you never got to meet her in person, but I'm sure she appreciated your friendship here. ETA yes, she posted here in 2016.

Yes, I think she was pretty quiet about her breast cancer journey, especially once it had gotten to a certain point. I PM'd with her often and got some details. She was doing a lot of chemo treatments (and handling them well). Despite what she was going through, I was amazed at how well she got on with her life and her outlook. The last time I PM'd with her, I knew that she was running out of treatment options but what she was doing seemed to be holding everything steady. I'm sure that things got to the point where she just didn't have the energy to be keeping everyone informed. It's amazing how much internet "friends" become a part of our lives.

 

[Dan Murphy]

All, I don't normally post on this thread but thought I'd stop by over the passing of one of our long-time DISers, PlutoPony. I don't think she had posted on this thread in a few years, however, she and I were fairly active here through the years and we lived in the same general area and our sons were the same age and had similar interests.

I lasted PM'd with her this past December 2018 and never got a response and didn't see much activity from her, so I was worried. I was cruising Facebook tonight to see if I could find some info on her through her son's page and I saw that she passed away in June. I feel so sad. I always wanted to meet her in person but that never happened. But we shared a lot about our sons and she told me all that she had been through with breast cancer. If memory serves me, she had a fairly small cancer that seemed no big deal but it was one that apparently had a knack for spreading and she ended up having it metastisize (sp?). She knew it was back one day when she was just walking and her femur broke. She was really so strong in the face of it all and I admired her strength and how she got through it. Anyway maybe some of you knew or were in touch with her but just in case not, I thought you may want to know.

Very sorry and sad to read this, Christine.

 

[Pea-n-Me]

Yes, I think she was pretty quiet about her breast cancer journey, especially once it had gotten to a certain point. I PM'd with her often and got some details. She was doing a lot of chemo treatments (and handling them well). Despite what she was going through, I was amazed at how well she got on with her life and her outlook. The last time I PM'd with her, I knew that she was running out of treatment options but what she was doing seemed to be holding everything steady. I'm sure that things got to the point where she just didn't have the energy to be keeping everyone informed. It's amazing how much internet "friends" become a part of our lives.

Very sorry and sad to read this, Christine.

It always feels like a kick in the teeth to me when someone I know dies from this disease. Someone else I know IRL also lost her battle recently, and it hit me hard. I will keep PlutoPony and her family in my prayers.

Thanks for your annual October message on the "Why She Runs" thread, Dan.

Since it is October, I've been meaning to bring something up on this thread, and that is to say to people with a history of breast cancer, watch your drinking. More and more evidence is coming to light that it can contribute to breast cancer. I know it's a little confusing because we hear that maybe a glass of red wine daily has some health benefits. But more than a little alcohol, if any, isn't necessarily a good thing - for us. Just something to be aware of, friends. :flower3

https://www.mdanderson.org/publicat.../alcohol-breast-cancer-risk-what-to-know.html

http://www.ascopost.com/issues/marc...eness-of-the-link-between-alcohol-and-cancer/


http://www.wbur.org/hereandnow/2018/05/10/alcohol-breast-cancer-risk

 

[Feralpeg]

So sorry to hear of PlutoPony's passing. Tends to make me realize just how fragile life is. This beast is always lurking in the shadows.

 

[leebee]

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[luvmarypoppins]

Sorry to hear about Pluto Pony

Peg - how is Kendall?

Laurie - how was your trip?

My sweet dil is having such a hard time now dealing with her mom, that house etc.

Now dh uncle died. Glad he visited him in Washington. He talked to the cousin. No services.

A lady from our church also passed away. We went to the viewing. This is getting weary.

ds3 quit the icu and is going back to his old floor. Celebrating his bday tonight. A miracle and day that worked for everyone lol

going to make the mammo appt.for Saturday hopefully.

GAGWTA.

 

[snappy]

Happy birthday to your son, LMP. Footy about all the losses in your life. Hugs to your DIL.

Sorry to hear about Pluto Pony’s passing. I am afraid I can’t remember her earlier posts here but I agree every loss hits close to home.

Our WDW trip was good, great top floor view at BWV and beautiful breeze and weather but hot. We hit some sort of wall this time and really slowed down. Mostly 3 fast pass rides a day and a lot of relaxing on the balcony.

My mom had major surgery to correct pelvic prolapse. Her BP dropped after surgery and scared us and her blood levels cratered the next day necessitating a transfusion of 1 pint of blood. She’s in 24 hour nursing care at her senior community temporarily. She’s a bit confused. It’s scary. Hoping she gains strength and some memory back. I have been at the hospital and now the nursing unit a lot. I am sure I am driving everyone crazy, including my sister.

Planning more trips in 2019, February and May to WDW and then a bucket list trip to Utah for an extended rafting trip/music festival/National Park visit trip. Hope we hold up until then. The jury is out on that.

 

[Feralpeg]

Peg - how is Kendall?

GAGWTA.[/QUOTE

Two steps forward. Three steps back. So, the neurologist had diagnosed Lupus attacking her nervous system. The rheumatologist did not agree. She ran a bunch of tests. It's not lupus. She said it has to be neurological and sent us on our way. Kendall does have a problem with her neck. The MRI showed that something is wrong, but we were told that it couldn't be causing her other issues. We will still be seeing a orthopedic specialist after the first of the year.

It's very frustrating because the neurologist looked at all the MRI's and said it wasn't neurological. It's been suggested that she see a genetic specialist. At this point, I'm willing to do just about anything. We are waiting until the first of the year to continue the quest. I had to change insurance. We have Florida Blue, but most of the specialist have dropped all but the highest level of their insurance. The new plan will double what I've been paying for Kendall, but it's necessary. Once the new plan kicks in, after the first of the year, I plan on taking her to Mayo in Jacksonville. Hopefully, they will look at all her problems and tests and get to the bottom of this.

On the bright side, Kendall has been working with a personal trainer. She is working so hard to strengthen her muscles. It is helping some. She isn't limping as badly. Something is causing her muscles to deteriorate.

So, we continue the trek. I know there is an answer out there. It's just difficult finding it. Fortunately, Kendall is a trooper. She doesn't give up and I'm not about to give up on her!

 

[robinb]

I just read about PlutoPony. I remember her from her time on the DIS an I'm so sorry to hear about her passing .

 

[smiley_face2]

Popped in to say hello! LMP I am sorry about so many losses. We lost my father in law and a dear uncle within weeks of each other this year.
Peg I am so sorry your daughter is having these health issues. I pray for you to get the help she needs to turn things around. There is nothing worse than having a child with bad health, or any other problem for that matter.
I am so sad to read about plutopony, and like the rest of you, it is a reminder as to the fragility of our situations, and not to take being here for granted.
Our family is doing ok, I just had another 6 month scan and she said, "see you in 6 months" which is her way of saying things look good because she is not actually allowed to give results.
I agree with that information on alcohol, there is no safe amount. I try to live by my grandmothers theory of everything in moderation, but choose to not drink very much at all anymore.
Dear daughter has been doing so well with her new career, what a blessing that has been, and I don't remember if I posted that her and her partner got married this summer? It was a beautiful semi elopement wedding at a wilderness lodge, just immediate family. grand kids are all doing well, bar a couple of knocked out teeth horse riding! Now I am going to search and see the last post from Diane, I didn't see her in the last 2 pages that I read through.
GAGWTA

 

[low-key]

Lets all keep fighting, you never know when the enemy will decide to attack us again, and remember the falling soldiers

 

[smiley_face2]

Haven't checked here in a while, sorry! Good to see the familiar faces.

I am very familiar with the "iron bra" feeling from UMX in 2012. Had bought a few super comfortable bras with filling on one side, front close, from TLC. They aren't making them anymore. Now what do I do? Mine is more lymphedema than the scar I think, lost a lot of nodes.

Posted months ago that I was having CT Scan and MRI for a chronic cough. It wasn't cancer but didn't give any answers. Finally figured out it's a sulfite allergy and have cut wine intake way back. My last guilty pleasure, sigh. But at least the cough is under control.

Glad Kendall has answers but that's a tough one. I hope the new med does wonders for her.

LMP, congrats on the wedding and I hope your leg heals!

Hi Diane! had to go hunting back to find you that is very interesting about the sulfite allergy causing coughing! I have been going through that the last couple of years, I am going to experiment a little and see if that could be my problem! Like you wine is my last guilty pleasure, but I have decided to not enjoy it as often, due to all the new research regarding any alcohol and increase of cancer risk. you can buy organic wine that has no sulphites, maybe I should not tell you that! lol. I hope your daughter is doing all right, is she still in Oregon?

 

[Dancind]

Hi Smiley! I've been thinking about you, glad to hear you are doing well! Yes, the wine thing is the pits. I can drink a little red with age on it, from sort of organic/natural winemakers. I also have some hydrogen peroxide drops that helps (maybe) with sulfites, but have not been drinking most nights. Whites and rose' have more sulfites, so does sparkling! If I drink something with too much, the cough, mucus, come right back. It also causes seborrheic dermatitis on my face. I blame this on the chemical injury stuff, still. Or maybe just age. But yes, less wine is no doubt good.

Daughter is in OR and finally doing better. We went for 10 weeks last summer and remodeled the basement of our house, and she is living there. She got a job in September, and met a guy. She is very underemployed but the pay is ok, and she seems happier. So less worrying for me. We still have not managed to move.

Wonderful to hear about weddings! Having our families do well is always good for our health too. Peg, I'm so sorry Kendall is still struggling. So many bad things in our environment these days, young women seem to be having all sorts of health problems.

 

[luvmarypoppins]

smiley and Dianna - good to see you both posting. Sounds like things are going well and with your family's too..

Interesting about the alcohol. A lady I know just had a double mastectomy and she was an alcoholic. I hope she does well. I was really friends with her mom. I hope her daughter will try and support her though their relationship is strained. My oldest ds and her dd were in high school together.

dh and I are going to Disney Nov.28 - Dec. 4. Staying 2 nights Swan, 2 nights Dolphin and back to the Swan for the last 2 nights. The room prices are outrageous! Going to see the Candlelight processional and going to the Christmas party.

Thankful for all of you. Have a blessed Thanksgiving.
GAGWTA

 

[smiley_face2]

Hi Smiley! I've been thinking about you, glad to hear you are doing well! Yes, the wine thing is the pits. I can drink a little red with age on it, from sort of organic/natural winemakers. I also have some hydrogen peroxide drops that helps (maybe) with sulfites, but have not been drinking most nights. Whites and rose' have more sulfites, so does sparkling! If I drink something with too much, the cough, mucus, come right back. It also causes seborrheic dermatitis on my face. I blame this on the chemical injury stuff, still. Or maybe just age. But yes, less wine is no doubt good.

Daughter is in OR and finally doing better. We went for 10 weeks last summer and remodeled the basement of our house, and she is living there. She got a job in September, and met a guy. She is very underemployed but the pay is ok, and she seems happier. So less worrying for me. We still have not managed to move.

Wonderful to hear about weddings! Having our families do well is always good for our health too. Peg, I'm so sorry Kendall is still struggling. So many bad things in our environment these days, young women seem to be having all sorts of health problems.

That is good news! Daughter and her husband decided to skip a honeymoon for now, they are putti g in a new kitchen! Lol but they decided to do a family homeymoon and are taking the kids to Disneyland next year, and we are going too! Our youngest daughter is going too, its a long time away, next November but that gives us lots of time to plan. We wanted to wait until the new “Star Wars Land” is open, but not right away because of crowds, so we picked what is normally one of the quietest weeks, the week before thanksgiving. We thought if we are waiting till after summer, we will go when weather here is bad and thats then! November has always been my least favourite month, it can be grey and raining for 2 weeks at a time some years! Iwould say 90% of our Disney trips have been in november. We already have our hotel booked, and rates for that time have already shot up! I am guessing rates will be very high after next summer!
LMP I wish we were going this year as well! We saw the CP in Disneyland once it is so beautiful! It will be a bit too early for it when we go next year. Enjoy it! And all the yummy things to eat!
Happy Thanksgiving to all in the US, in Canada we had ours way back on Oct 8!

 

[luvmarypoppins]

Anyone is welcome to free cheese at my wine fest lol

we haven't had heat since saturday. The part will be here tues and ready to install wed.
we go to Florida wed. It will be below freezing that night here. None of the d's can be here till saturday.

dil has the shingles.

the epcot boats won't be running when we are there. Not good when my breathing is not good these days. Did this in May too. A total pita.

I just feel like I can't enjoy the trip. If we could cancel it and not lose all the money I would but it's past the date now. Sigh.

GAGWTA.

 

[luvmarypoppins]

Back from the trip and it was pretty bad
They were ripping apart the Swan lobby and front entrance. Busses were at the Dolphin
epcot boats left before the fireworks
The Christmas party was fun
3 drunk ladies sat next to dh at the candlelight processional.
last night a server dumped a whole tray of drinks down dh back
never got to a park before noon. Never went to Ak or saw toy story land because dh said I am on vacation sigh.

at least we have heat now, Dh is back from Massachusetts. Tomm. We have another funeral viewing. Will this ever stop?? Getting weary.
GAGWTA

 

[disneyholic family]

Need some prayers. Sweet dil father passed away suddenly today.

This is the third death in our family since the wedding.

Everyone is devastated.

GAGWTA

so sorry to hear about all the sorrow, and also that your DIL has shingles....i've been trying to be vaccinated against it for the past year, but either i'm sick or they run out of the vaccine - so far no success.....i know how painful it can be, so i guess i'll try again once i finish chemo...

All, I don't normally post on this thread but thought I'd stop by over the passing of one of our long-time DISers, PlutoPony. I don't think she had posted on this thread in a few years, however, she and I were fairly active here through the years and we lived in the same general area and our sons were the same age and had similar interests.

I lasted PM'd with her this past December 2018 and never got a response and didn't see much activity from her, so I was worried. I was cruising Facebook tonight to see if I could find some info on her through her son's page and I saw that she passed away in June. I feel so sad. I always wanted to meet her in person but that never happened. But we shared a lot about our sons and she told me all that she had been through with breast cancer. If memory serves me, she had a fairly small cancer that seemed no big deal but it was one that apparently had a knack for spreading and she ended up having it metastisize (sp?). She knew it was back one day when she was just walking and her femur broke. She was really so strong in the face of it all and I admired her strength and how she got through it. Anyway maybe some of you knew or were in touch with her but just in case not, I thought you may want to know.

i'm so sorry about plutopony....
breast cancer is just so unpredictable...it's what so many people don't understand...there is no such thing as one kind of BC....each kind can be so very different...some respond to chemo, others don't...
just so sad when the outcome is like this...

It always feels like a kick in the teeth to me when someone I know dies from this disease. Someone else I know IRL also lost her battle recently, and it hit me hard. I will keep PlutoPony and her family in my prayers.

i'm in several facebook groups (several for TNBC, Flat&Fabulous, Xeloda, etc)...
each time someone in one of the groups takes a turn for the worse or dies, it's just so sad...
my daughter told me she thought it wasn't good for me to be there, but i think it's important to be there to support others as they make their way through this sometimes treacherous journey...


updating where i am - i think the last time i posted i'd just had my double mastectomy...
although before the surgery, the MRI showed that i'd had a complete response to the chemo, it turned out that the MRI was incorrect...
MRIs and PET scans can only see tumors that are larger than 2mm..
the pathology report from the surgery showed that while my breast had cleared of the tumor there, there were still some cancer cells in two lymph nodes (though not in the sentinel node) and worse, there was a small 1.5 mm tumor in the fat tissue surrounding the nodes...
so that was somewhat discouraging..

i had 25 radiation treatments during august/september....having nothing to do with the residual cancer - where i live, everyone gets radiation, regardless of stage and regardless of whether you do lumpectomy or mastectomy...
the only variable is how many treatments you get....if you have no lymph node involvement, you get 15, if you have node involvement, you get 25..

because of the residual cancer, i started a new chemo protocol in october - Xeloda..
it's given to women with triple negative breast cancer who didn't have a complete response to the neoadjuvant chemo...
the protocol is 8 cycles over 6 months...
it's an oral chemo, you take the pills in the morning and evening (number of pills depends on how much of the poison they have you take)..
you take it every day for 14 days, and then have 7 days off.....that's a cycle..
so i'll have 8 of those (if i make it - there are some who throw in the towel due to the side effects)...
i'm in the middle of my 3rd of 8 cycles...
so far i'm doing mostly ok with the side effects..
the hand/foot syndrome has gotten bad enough that i wear gloves almost 24 hours a day..
cotton gloves most of the time, and surgical gloves when i work in the kitchen...
and under the gloves a constant thick coating of heavy duty cream...

some days are more difficult than others...two days ago i was doubled over a good part of the day with terrible stomach and back pain....
but today is much better...the overall joint pain is pretty much non-stop....some joints worse than others (knees and hips and back the worst for me)...
but these are all known side effects so nothing special..
it's just a question if i can put up with it for the duration...
the purpose of this chemo is to reduce the odds of recurrence in women with triple negative..
this is based all on one study that was done in japan that showed a reduction in recurrence in TNBC of 10%....so not that big a reduction, but 10% is better than nothing, so still worth going through it since TNBC is such an aggressive breast cancer...

i'll finish this chemo in april and the whole family is scheduled for a big celebratory trip in july (disney magic cruise followed by 4 days at DLP)...
the 9 of us get back from that trip on july 26..
then on august 4th my daughter and i get back on a plane and head for WDW for the dis event!!
my daughter wanted to do something special just the two of us to celebrate the end of treatment, so we're leaving the menfolk at home (DH and DSIL)....

.

 

[luvmarypoppins]

Wishing you all a Merry Christmas and Happy Holiday Season.

10 years ago I was crying and decorating the tree not knowing what was in the future and no thanks to dr. Who almost killed me it almost was my last one. But PTL I am still here.

keep fighting strong everyone and enjoy the holidays! We are celebrating ds1 and dil bday sun. Only time it worked.

GAGWTA