Dis Breast Cancer Survivors Part IV - GAGWTA

[disneyholic family]

Prayers for those going through treatment and surgery

my heart test was normal. Next up is the pulmonary testing. I still can't breathe well and my feet are swollen.

Dh and I went to Disney for our anniversary and my birthday. The Swan was ok. Didn't like not having the boats and dealing With The rain. Third day of trip ds 3 called from Lima Peru and said they wouldn't let him into costa rica because he didn't have a yellow fever vaccine. So he had vacation time and an ap and joined us. Not too thrilled. but we put him to good use pushing the wheelchair when needed. We loved the beach club. Food was good except Marrakesh.

And in life dh is coming back from Virginia today and going to Germany the end of the month. He will miss the family bridal shower. Ds1 waiting for his house closing. Ds2 and fdil waiting to see if their house bid is accepted and ds3 will start in a New neurological ICU job next month. He was bored on his floor. I need to order my gown for the wedding.

GAGWTA

good luck with your tests and congratulations on the family wedding!

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[disneyholic family]

Great news, robinb! Luvmarypoppins, the weather in Orlando has been crazy. It was so dry for months. The first of April, it was like someone opened a top. We've had so much rain!

Hope you're all doing well! We are waiting to hear Kendall's test results. She has an appointment with the neurologist on July 6th (soonest she could get in). They posted the results of some of her tests on her patient portal. It is definitely not Lyme Disease. It also, looks like it is not MS. According to the notes posted by the tech, it appears that she may have systemic lupus. Odd, we thought that might be the case several years ago, but the markers were not all there. I'll be so glad when we know something definitively.

Thinking of you all!

crazy how long it takes to see some specialists!!
i hope they figure out what Kendall has so she can begin treatment!

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[jackskellingtonsgirl]

GAGWTA!
Just popping in to say hello. I think of you ladies often, but don't get back to the DIS very frequently. Anyway, hugs all around!
My mom had her 10 year survivor anniversary (and her 70th birthday) in February. She is doing well!
I had my first 3D mammo in May - all clear.

Headed to F&WF with DH in September. Anybody else planning to be there?

 

[snappy]

Hugs back to you! How is your handsome son doing? Our youngest just graduated from college May 21th.

We are going to food and wine but not until mid October. Unfortunately we will miss you.

 

[jackskellingtonsgirl]

Hugs back to you! How is your handsome son doing? Our youngest just graduated from college May 21th.

We are going to food and wine but not until mid October. Unfortunately we will miss you.

He is doing well, thanks! He is 22. Dabbles in college classes, works at Barnes & Noble. He says he is moving to Orlando in August to live with his girlfriend. We shall see!
I think October is better, but DH's AP expires in September so we wanted to get this trip in without having to renew it.

 

[kirstenb1]

so i made it through chemo...well...not all of chemo...
i was supposed to do 16: 4 AC and 12 TC
i did the 4 AC, then managed to do 9 TC, then for number 10 i only did taxol, no carbo (neutrophil count was too low to get both).
and then that was it..
the oncologist stopped my chemo so i didn't get 11 or 12 of the weekly taxol/carbos
she didn't want to exacerbate the neuropathy....
so that's that...

my surgery has been advanced by two weeks to june 18th...
the mammogram/ultrasound that they did last week shows the cancer in my lymph node has disappeared, and the tumor has gotten smaller (but hasn't disappeared).
but i suppose it doesn't matter as i'm getting a mastectomy, so the whole thing is being lopped off anyway...both of them (DMX)...

and then once i'm done with that, i'll begin radiation...

i've been having fun planning the family trip for next summer...disney cruise and DLP.....by then hopefully this will all be a distant memory...

Best wishes with the surgery. I'm 6 weeks out from BMX. Everything went well, although I have PT to help with my range of motion. We just returned from WDW yesterday. It was a great trip!!! Will be thinking about you!!!

 

[luvmarypoppins]

GAGWTA!
Just popping in to say hello. I think of you ladies often, but don't get back to the DIS very frequently. Anyway, hugs all around!
My mom had her 10 year survivor anniversary (and her 70th birthday) in February. She is doing well!
I had my first 3D mammo in May - all clear.

Headed to F&WF with DH in September. Anybody else planning to be there?[/QU

hi Elizabeth!

glad to hear your mom is doing well and that your test had good results
sounds like your son has a plan. Wishing him all the best!
We miss your posts.
Actually thought of you when we were at the Yachtsman and your favorite server there.

 

[luvmarypoppins]

Hugs back to you! How is your handsome son doing? Our youngest just graduated from college May 21th.

We are going to food and wine but not until mid October. Unfortunately we will miss you.

hi Laurie

Hugs back to you! How is you

Hugs back to you! How is your handsome son doing? Our youngest just graduated from college May 21th.

We are going to food and wine but not until mid October. Unfortunately we will miss you.

hi Laurie -congrats to your daughter! The gartner conference is Oct 14-18 so we are going before or after that. All the epcot rooms are sold out to the conference then -non dvc.
after middle sons wedding in August i will need a vacation!

 

[snappy]

hi Laurie



hi Laurie -congrats to your daughter! The gartner conference is Oct 14-18 so we are going before or after that. All the epcot rooms are sold out to the conference then -non dvc.
after middle sons wedding in August i will need a vacation!

Thanks! We are proud of our baby!

Yea a wedding! Has the family shower taken place?

I’ll text you our dates. It would be great to see you!

 

[jackskellingtonsgirl]

Thanks! We are proud of our baby!

Yea a wedding! Has the family shower taken place?

I’ll text you our dates. It would be great to see you!

Laurie, what will your DD be doing after graduation? What is her degree in?

Mary Ann, a wedding sounds lovely! Congrats to your DS!
We haven't been to Yachtsman lately. Maybe we can pop in to see Ricardo in September.

 

[snappy]

Laurie, what will your DD be doing after graduation? What is her degree in?

Mary Ann, a wedding sounds lovely! Congrats to your DS!

DD22 received a BS in coastal environmental science, minor in biology. She wants to do research. Currently she’s working full time for one of her marine biology professors in his lab. She’s applied for internships. Lots of opportunities in Louisiana since there is a boat load of private and public money being spent in this area. Probably will go to grad school. Getting ready to take her to nyc for a celebratory trip and to see DD28 who lives in Brooklyn. They both have serious boyfriends. The plot thickens as they say. Dd 22’s BF is heading to North Carolina in a few weeks for grad school. I am hoping for a wedding and grandkids before I am old and gray. Wait a minute, I am old and gray.

 

[Pea-n-Me]

Nice to see you, jackskellingtonsgirl!

Glad everyone's news is good!

 

[luvmarypoppins]

Hope everyone is doing well

peg - hoping Kendall's dr. Visit goes well and that there will finally be some answers.

my dr. Visit got moved back another two weeks to early oct. So now I need all new lab and tests scripts since I only go twice a year and the scripts will be outdated.

dh is doing well in Germany. Love his pictures. The bridal shower is tomm. And last I heard fdil mom was admitted to the hospital last night. We shall see. I booked the rehearsal dinner today. Spent several hours shower shopping with ds3 the other day. Now working on plans for visiting friends and relatives. My head spins.

GAGWTA.

 

[luvmarypoppins]

Peg - Hoping Kendall's visit went well and that there are answers for her

Thoughts and prayers for all those in treatment.

Finally got the pulmonary test scheduled and eye dr. too. Next I will do the mammo. Need to get it done by the end of July because in August dh will be back to the West coast for 10 days and then it's wedding stuff.

I survived the bridal shower. It was nice but small. Her mom was in the hospital and I noticed her relatives barely talk to each other. Such is life.

the old timers here will remember a sweet young lady I mentioned several times Alyssa. She is 28 and has survived leukemia, bone marrow transplant, heart transplant, 2 brain tumors and a hip replacement. Well wonderful news, she got engaged!!So happy for her!!

GAGWTA

 

[Feralpeg]

Finally got the results of Kendall's tests. The good news is that it isn't MS. It is systemic lupus. It is attacking her nervous system. While I am not happy that she has lupus, I am glad we have a diagnosis. For the past five years, they've been treating her for fibromyalgia. The drug she has been on is not what she needs. Our next step is to meet with the rheumatologist to get her started on proper treatment for her type of lupus. From what we were told, they will probably put her on immunosuppresant drugs. She will also need to start working with a physical therapist. She has trouble walking any distance. There is no cure for lupus. Fingers crossed they can get a handle on this and improve her quality of life.

Hope everyone had a good 4th of July. Thinking of you all!

 

[Dan Murphy]

Stopping by to share that Marie had her routine mammogram a week or so ago. All is good, 20 years down the road now.

My best for Kendall, Peg. She will be in my prayers. 's

Everybody here is in my prayers, wishing everyone well in your own individual journeys. 's

 

[Feralpeg]

Thank you, Dan! So glad to hear Marie is doing well. Twenty years!

 

[disneyholic family]

Best wishes with the surgery. I'm 6 weeks out from BMX. Everything went well, although I have PT to help with my range of motion. We just returned from WDW yesterday. It was a great trip!!! Will be thinking about you!!!

wow, amazing that you went to WDW so soon after your BMX!!!!
no way could i have done that...

i had my BMX on june 18th....so i'm at 5 weeks out....
i find it pretty painful - the pulling and pressure....
i have pretty good range of motion - complete on my left (the prophylactic side) and almost complete on my cancer side where he also did an axillary node dissection..

i'm glad i went to this surgeon - he tends to the conservative, so even though the sentinel node was negative, he still did the axillary node dissection since i had had cancer in the nodes in the original diagnosis..

as it turned out, though the sentinel node was negative, it was what is referred to as a false negative, because two of the other 10 nodes that were removed still had cancer in them, as did the adipose tissue (AKA fat) around the nodes ...

so bottom line, in addition to the radiation that i knew i'd have to have, i'll have to have another 6 months of chemo...(although it's possible that the oncologist always planned on giving me more chemo after the radiation because i'm triple negative)...

i was pretty bummed about it last week when the pathology report came back, but i'm ok now....managed to go back into denial which i'm pretty good at...

good thing i reserved the big family trip for summer 2019!! i should be ok to travel by then...

i'm going to the beach tomorrow with DH and our 4 year old grandson..
i forgot to look for a new bathing suit so i just mutilated my old one...
cut out the underwire bra in it....kind of funny...
it doesn't fit very well, but in any case, i always wear a rash guard over my suit, so it doesn't really matter...
i have to find myself a speedo ...i'm guessing that will fit best...

.

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[luvmarypoppins]

Beth- how you had a wonderful time at the beach and wishing you all the best during treatment

Dan - great news about Marie.

Peg - Glad Kendall finally has answers and hope this new dr will have a good plan for her.

well today I accidentally bumped my leg on the dishwasher door corner, blood gushing everwhere. Dh and ds3 came to my rescue. Went to urgent care. They couldn't stitch it and off to the Dr we went. Ds3 decided to work overtime in the er on his day off lol. After 3 hours waiting the dr stitched me up. He said I am a mess. No guarantees and I might need a skin graft and the wedding is a month away. Say a prayer!

GAGWTA!

 

[Feralpeg]

LMP, Hope you're feeling better soon and that you don't need the graft! Thinking of you!