Dis Breast Cancer Survivors Part IV - GAGWTA

[smiley_face2]

Hello all!

I realize it has been a very long time since I was here. Every once in awhile I come on here to lurk and read Mom's posts! I felt compelled to do a quick update.

Mom has been gone for two years now. In some ways it feels like longer.

Last October I got married to my wonderful boyfriend, we have been together 7 years as of this January! We picked October to continue the trend of both my parents and sister getting married in that month. It was a lovely small wedding on a Sunday morning. We honeymooned in Disney and finally got to experience Food & Wine! Mom would have been so tickled to know that's what we picked.

My dad has been dating someone for a little over a year now. When he broke the news I was devastated and very angry. However she is a very nice person and they are so cute together! It is still hard to deal with sometimes but it's getting easier. They met at work when working on a committee together. As far as his legs...they healed wonderfully and although I believe there may be a bit of arthritis forming, he does not need any aids to walk!

My sister had another baby around Thanksgiving in 2016. Her name is Cora and she is very unlike Zoe...very easygoing! Haha. Zoe will be starting preschool in September. Where has the time gone!?

I want to wish everyone here good luck in their fights and I'm so happy to see the love and support that this thread has had in the past is still going strong!

I have not been here to the forum in a long time, lot's of real life going on, But I am so glad I popped in again to see your message!!! I often think of your mom and really miss our talks about stuff, especially our mutual trips to Disneyland, and along the coastal highway in California. I say hello to her spirit, when we are at Moonstone Beach, I know she made that part of your big trip that one year on my advice I am so happy for your good news, and I know your mom was there with you. I understand your feelings about your dad moving on, after our son died, our daughter in law remarried just 3 years later and it was very hard to accept, and hard for our grand children too. But we all need someone to share life with. I am happy your sister has another child too, I know your mom loved Zoe so much! thankyou for coming to update us, and I honestly can not believe she has been gone so long already. Our son has been gone for 8 years now and it still feels like it happened just yesterday. Oh and I am glad your dad recovered! I couldn't even believe it when that happened, it was such a hard time for them both!

 

[smiley_face2]

I'm sorry that I'm too new here to know your story and your mom's...I may have to go through the archives to find that out. I just wanted to say congrats to you on your wedding...October is a great month...my husband and I will celebrate our 20th anniversary October 3rd this year.

I totally emphathize with you about your dad. My mom died after a long cancer battle in February of last year and by APRIL my dad was dating again, which was about the time I got my own cancer diagnosis. I can't even describe to you all of the emotions dealing with my cancer battle, mom's death, my MIL who was also battling cancer (and died in July) and then my dad's dating. I *STILL* get PTSD when my dad visits me sometimes because I worry about what else he will tell me, as dropping the news that he was sleeping with somebody else was pretty horrifying for me. My brother and I had many phone conversations and tears about dad and his girlfriend because to us it was like we were losing him also, which I know seems strange. THIS week my dad is in Maryland where he is helping his girlfriend move, she sold her house and will be living with him in North Carolina now, just over a year after my mom died in that same house that she and my dad built together. Visiting there in the future for my family will be very odd because there will be somebody else living there now who really is a stranger to us. We keep trying to think about DAD first in all of this, I mean at 72 years old he deserves to be happy and not lonely so we just have to stay strong about all of this. (((HUGS))) to you as well while you go through the same struggles.

Oh that is so hard! our daughter in law was married within 3 years of our son being killed. that was such a shock for us, then she decided to move away with our 4 dear grand daughters which was another huge shock and big loss for us. Our oldest grand daughter wanted to move back and live in their house again, it was being rented out, but then our daughter in law decided to sell it. Just one huge loss after another so I do know what you mean, we still see a councillor every weeks, and it has taken the last 3 years to start to get control over my reaction every time the phone rings or someone comes to the door. I lived in fear for the last 7 years. I still have lot's of really bad days. You are right, he does deserve to be happy too, but yes it is hard when family members seem to move on so quickly.

 

[smiley_face2]

Its so hard getting to post here.

Dh survived another layoff PTL.
Snow tomm.

Ds2 and future dil are getting married the last sun in Aug. Her mom is buying her dress. She likes the mermaid style with the total exposed back. I am more of the cover it up mom lol! Its a place with gardens a river and fountain and peacocks from 1l:30 to 5:30. Maybe about an hour from here.

I met my Goodreads goal of 40 books this year too!



Happy and Blessed 2018 to all.

That sounds so beautiful! and so nice it is close to your home!

 

[smiley_face2]

Disneyholic, best of luck to you during your chemo. Are you in Canada? Sounds like they treat you very well during major illness. Having someone help you through the logistics is so valuable.

Well, the chest CT was not fun. I had hives for two weeks. But no signs of cancer, pulmonary embolism or equally bad things. I just still don't know what's causing my cough. Back for a liver MRI next week, probably just a hemangioma but got to do those tests!

Six years out for the first tumor now, three for the second. Seems unfair to still be doing tests, does it not?

Daughter is hanging in there. We have decided to get her an Emotional Support Animal, found a six month old extra sweet hand raised kitten. She tried adopting an older cat, but could not find a kitty that wasn't too independent. At least I'm going to be a Grandma, of a kitty!

And now from the other side, my 88 yo Dad's step daughter wants him OUT. Problem is, they live in the middle of nowhere, MT, and I think his pension pays their mortgage and only car. Fun times.

Glad your daughter is doing ok, our youngest daughter got a kitten in the fall too, basically and emotional support kitten as well. She has been struggling lately, not that her older sister is finally stable, it's always something right? I am really glad your test have been clear! I am due for my semi annual tests next month again. Sorry you are having to worry about your dad!

 

[smiley_face2]

Our christmas trip to Disneyland, this is our oldest grand daughter, our dear son's firstborn who is so much like him in both looks and mannerisms it is unbelievable! It was very hard for the first 5 years or so after he died, but now it is the biggest blessing in my life!! I love her like I did him, and I hope when she is done school she will move back here to go to college. her and her sister, his second oldest, have both asked us to please not sell our big house so they can come live with us Sadly his two youngest daughters, were too young when he died to remember him. they have moved on well and now call their stepfather dad. in the picture the 4 fair haired girls are our grand daughters.

 

[Pea-n-Me]

Beautiful posts and pictures, @smiley_face2 !

And @Elmo9607, thank you for stopping by and updating us. I miss your Mom.

 

[luvmarypoppins]

kirstenb - welcome. The ladies here are a great source of information and strength. I admire each one of them. I just hang out here as I have thy ca.

Emily - so happy to read your update. Your J. is a keeper. Wishing you many years of happiness. I also pray you will have peace about your dad.

Smiley - thanks for sharing those pictures. Looks like you had a wonderful time!

Thistle Mae - how was your trip?

Peg - how did Kendall's testing go? Wishing her all the best.

Linda - did your dd get the job she wanted? Wishing her all the best too .

Well I havent done the echo yet as dh is recovering from the flu. He stayed home 2 days from work, so he was really sick and he had a flu shot no less.

In other life...Ds1` is looking at houses and keeps getting outbid as does ds2 and future dil. The bridal shower will be June 30. Good as dh is going to France and Germany the lst two weeks in June I think.

Ds3 went to Calif. for a few days to visit his friend who is a travel nurse. I guess he saw its not all its cracked up to be and she said she is lonely there by herself. They went to the beach, bike riding, whale watching, comedy cluband he facetimed me from Disneyland and during the World of Color show too. It was fun. He has now applied for a job in ICU. So we will see if he gets an interview. He said he is not challenged on his floor.

I am feeling a little better with my one med being adjusted. Not too hyper and no heart palps. Its such a balancing act. I have to have a blood test in 2 weeks. Between the side effects and trying to suppress as much as possible so the cancer doesnt grow back. Always something.

Still havent planned the May disney trip yet. I am always last minute annie for sure. DH said he wants to go to yachtsman. I am thinking o a split stay between the swan and yacht club. But the disney hotels are so expensive even with an ap discount.

We are suppose to have more snow on Sat. Spring where are you???

GAGWTA

 

[Pea-n-Me]

Yes, she did, lmp! Thanks! It sounds like you've been pretty busy!

 

[disneyholic family]

Hi friends, I'm visiting you for the first time. I have several in situ, grade 0 spots in one breast. They are too far apart for a lumpectomy to be a viable option. So I'm leaning toward a double mastectomy, but without reconstruction. The reconstruction gives me pause because it's a more involved surgery and recovery. And I just am not ready to think about things like infections or other stuff going on. Has anyone else here not done reconstruction? Or postponed it? I'm 51, and go to the gym almost everyday. I love swimming and water parks, but I always wear a long sleeve rash guard shirt anyway, so that wouldn't change. I have had a couple of weeks to contemplate this. Y'all seem like a very sweet and close group.

are you on facebook? if so, there is a closed facebook group (meaning you have to ask permission to join and any posts you make there are closed within the group - so it's very helpful on this topic)..
the group is called "flat & fabulous".....self-explanatory - people who have opted for mastectomy without reconstruction..
i haven't yet had my double mastectomy (i'm still in the chemo stage of this journey), but i will have one...
being in the Facebook group has helped me confirm to myself that flat is how i want to go..

my sister had a double mastectomy about 6 years ago i think it was....she chose to go flat...no reconstruction..
after multiple cancers and multiple surgeries, she just wasn't interested in adding yet more surgery (reconstruction)..
she's still very happy with her choice...

right now, i'm just worried about the DMX itself......it's not exactly simple surgery lopping off the girls completely....and then having those infernal drains for a few weeks, etc....
but lots of other people have made it through it, so i will too...

good luck with your decision....go with whatever feels right for you...

.

 

[disneyholic family]

so hi again! haven't been around for a month i think...
i'm now in the second phase of my chemo..
i completed the AC stage (AC every 2 weeks for 4 rounds).
and am now in the 12 weekly taxol-carboplatin chemo stage..
i've had 3 of the taxol/carboplatin treatments and have 9 to go...

once those are over, i'll have a one month recovery period and then on to my double mastectomy....and then i suppose radiation after that..

my tumor has definitely responded to the chemo...or at least to the AC (hopefully also to the TC)...
it's shrunk from the giant it was before...so that's good news!!

the chemo has been hard, but i'm ok so far....my biggest issue actually is fear of IV...hahah.....the nurses where i get chemo are not the best at finding veins....and they always opt out for the easy route - my hand (which hurts like hell and destroys them to boot)..
but it turns out one of the nurses is good at finding them, so 3 times i've succeeded in getting the nurse i was assigned to that day to call the expert nurse to start the IV in my elbow rather than my hand...what a relief...but every week now i get nervous worrying he won't be there...
here's hoping he'll be there on tuesday!!!!

.

 

[Feralpeg]

Just a quick update on my daughter's latest. For those not following, Kendall has been seeing a rheumatologist for several years. She was diagnosed with fibromyalgia. Recently, she started showing other symptoms. She will lose partial sight in one eye. It usually lasts for about 30 minutes, but has lasted as long as four hours. She says it is like having a black dot in the center of her eye. She has started having twitching in her limbs and balance issues. She has trouble swallowing. She also has 8 bulging discs in her back.

Her rheumatologist and her urologist both suspect multiple sclerosis. I made an appointment with a neurologist. He was very difficult to understand and really didn't seem to listen. He just kept asking about headaches. Headaches are not the problem. He prescribed Cymbalta. I asked if she should stop any of her other medications and he said no.

When I went to pick up the Cymbalta, the pharmacist had flagged it as a possible dangerous interaction. I called her rheumatologist who said she should not take the Cymbalta as it would cause a seratonin overdose which could lead to seizures. Needless to say, I lost all faith it that particular neurologist. He had ordered a brain MRI, so she went ahead and had it.

I began searching for another neurologist. I looked at the reviews on each and most were very bad. I finally found one with good reviews. Unfortunately, he does not take our insurance. I told them I would pay out of pocket as I just needed to have her diagnosed one way or the other. His nurse said he would have to look over her records and then, he would decide if he will see her. I sent over all her records last week. As of the middle of this past week, he has yet to look them over. So, we are waiting.

If she is diagnosed with MS, there is a doctor in this area that only treats MS patients. His reviews are good and he does accept her insurance. Unfortunately, he won't see her until she's been diagnosed.

It has been very frustrating. We just really need to know what she is facing. I really don't want her to have MS, but I want to know what is going on so she can be treated. She is deteriorating. The treatment plan she has been on is for fibromyalgia and is not effective for what is happening now.

Hopefully, we will hear back soon that the neurologist will see her and we can move on. I hate this. I would much rather it were me!

 

[JuneChickie]

Just a quick update on my daughter's latest. For those not following, Kendall has been seeing a rheumatologist for several years. She was diagnosed with fibromyalgia. Recently, she started showing other symptoms. She will lose partial sight in one eye. It usually lasts for about 30 minutes, but has lasted as long as four hours. She says it is like having a black dot in the center of her eye. She has started having twitching in her limbs and balance issues. She has trouble swallowing. She also has 8 bulging discs in her back.

Her rheumatologist and her urologist both suspect multiple sclerosis. I made an appointment with a neurologist. He was very difficult to understand and really didn't seem to listen. He just kept asking about headaches. Headaches are not the problem. He prescribed Cymbalta. I asked if she should stop any of her other medications and he said no.

When I went to pick up the Cymbalta, the pharmacist had flagged it as a possible dangerous interaction. I called her rheumatologist who said she should not take the Cymbalta as it would cause a seratonin overdose which could lead to seizures. Needless to say, I lost all faith it that particular neurologist. He had ordered a brain MRI, so she went ahead and had it.

I began searching for another neurologist. I looked at the reviews on each and most were very bad. I finally found one with good reviews. Unfortunately, he does not take our insurance. I told them I would pay out of pocket as I just needed to have her diagnosed one way or the other. His nurse said he would have to look over her records and then, he would decide if he will see her. I sent over all her records last week. As of the middle of this past week, he has yet to look them over. So, we are waiting.

If she is diagnosed with MS, there is a doctor in this area that only treats MS patients. His reviews are good and he does accept her insurance. Unfortunately, he won't see her until she's been diagnosed.

It has been very frustrating. We just really need to know what she is facing. I really don't want her to have MS, but I want to know what is going on so she can be treated. She is deteriorating. The treatment plan she has been on is for fibromyalgia and is not effective for what is happening now.

Hopefully, we will hear back soon that the neurologist will see her and we can move on. I hate this. I would much rather it were me!

I'm so sorry to hear this. I Have MS and its a hard row to tow so to speak. That said once they figure out which type of MS she may have they can get on with treatments. Science has come a long way from years ago when I was first diagnosed.

 

[disneyholic family]

Just a quick update on my daughter's latest. For those not following, Kendall has been seeing a rheumatologist for several years. She was diagnosed with fibromyalgia. Recently, she started showing other symptoms. She will lose partial sight in one eye. It usually lasts for about 30 minutes, but has lasted as long as four hours. She says it is like having a black dot in the center of her eye. She has started having twitching in her limbs and balance issues. She has trouble swallowing. She also has 8 bulging discs in her back.

Her rheumatologist and her urologist both suspect multiple sclerosis. I made an appointment with a neurologist. He was very difficult to understand and really didn't seem to listen. He just kept asking about headaches. Headaches are not the problem. He prescribed Cymbalta. I asked if she should stop any of her other medications and he said no.

When I went to pick up the Cymbalta, the pharmacist had flagged it as a possible dangerous interaction. I called her rheumatologist who said she should not take the Cymbalta as it would cause a seratonin overdose which could lead to seizures. Needless to say, I lost all faith it that particular neurologist. He had ordered a brain MRI, so she went ahead and had it.

I began searching for another neurologist. I looked at the reviews on each and most were very bad. I finally found one with good reviews. Unfortunately, he does not take our insurance. I told them I would pay out of pocket as I just needed to have her diagnosed one way or the other. His nurse said he would have to look over her records and then, he would decide if he will see her. I sent over all her records last week. As of the middle of this past week, he has yet to look them over. So, we are waiting.

If she is diagnosed with MS, there is a doctor in this area that only treats MS patients. His reviews are good and he does accept her insurance. Unfortunately, he won't see her until she's been diagnosed.

It has been very frustrating. We just really need to know what she is facing. I really don't want her to have MS, but I want to know what is going on so she can be treated. She is deteriorating. The treatment plan she has been on is for fibromyalgia and is not effective for what is happening now.

Hopefully, we will hear back soon that the neurologist will see her and we can move on. I hate this. I would much rather it were me!

i am so sorry ...
i can't imagine how upsetting and frustrating this is..
my 36 year old nephew was recently diagnosed with MS...
it took them a while to finally confirm it..
he's probably been symptomatic for years (falling down and balance issues), but somehow it took until last summer for them to come up with the possibility that it might be MS...
as another person noted, once he was finally diagnosed, he's finally receiving the appropriate treatment...
(he was finally diagnosed just before the birth of his second child)....

what's so terrible about your story is that the MS expert won't take your daughter until she's diagnosed...
i don't get that at all.......that seems so cruel....why won't the expert take her for diagnosis?...
there must be another MS expert somewhere in your area...
do you have any major medical centers around you?
maybe they have someone there?

 

[Pea-n-Me]

Just a quick update on my daughter's latest. For those not following, Kendall has been seeing a rheumatologist for several years. She was diagnosed with fibromyalgia. Recently, she started showing other symptoms. She will lose partial sight in one eye. It usually lasts for about 30 minutes, but has lasted as long as four hours. She says it is like having a black dot in the center of her eye. She has started having twitching in her limbs and balance issues. She has trouble swallowing. She also has 8 bulging discs in her back.

Her rheumatologist and her urologist both suspect multiple sclerosis. I made an appointment with a neurologist. He was very difficult to understand and really didn't seem to listen. He just kept asking about headaches. Headaches are not the problem. He prescribed Cymbalta. I asked if she should stop any of her other medications and he said no.

When I went to pick up the Cymbalta, the pharmacist had flagged it as a possible dangerous interaction. I called her rheumatologist who said she should not take the Cymbalta as it would cause a seratonin overdose which could lead to seizures. Needless to say, I lost all faith it that particular neurologist. He had ordered a brain MRI, so she went ahead and had it.

I began searching for another neurologist. I looked at the reviews on each and most were very bad. I finally found one with good reviews. Unfortunately, he does not take our insurance. I told them I would pay out of pocket as I just needed to have her diagnosed one way or the other. His nurse said he would have to look over her records and then, he would decide if he will see her. I sent over all her records last week. As of the middle of this past week, he has yet to look them over. So, we are waiting.

If she is diagnosed with MS, there is a doctor in this area that only treats MS patients. His reviews are good and he does accept her insurance. Unfortunately, he won't see her until she's been diagnosed.

It has been very frustrating. We just really need to know what she is facing. I really don't want her to have MS, but I want to know what is going on so she can be treated. She is deteriorating. The treatment plan she has been on is for fibromyalgia and is not effective for what is happening now.

Hopefully, we will hear back soon that the neurologist will see her and we can move on. I hate this. I would much rather it were me!

I'm sorry to read that Kendall has been having such a hard time. I hope you can find a solution soon.

 

[kirstenb1]

are you on facebook? if so, there is a closed facebook group (meaning you have to ask permission to join and any posts you make there are closed within the group - so it's very helpful on this topic)..
the group is called "flat & fabulous".....self-explanatory - people who have opted for mastectomy without reconstruction..
i haven't yet had my double mastectomy (i'm still in the chemo stage of this journey), but i will have one...
being in the Facebook group has helped me confirm to myself that flat is how i want to go..

my sister had a double mastectomy about 6 years ago i think it was....she chose to go flat...no reconstruction..
after multiple cancers and multiple surgeries, she just wasn't interested in adding yet more surgery (reconstruction)..
she's still very happy with her choice...

right now, i'm just worried about the DMX itself......it's not exactly simple surgery lopping off the girls completely....and then having those infernal drains for a few weeks, etc....
but lots of other people have made it through it, so i will too...

good luck with your decision....go with whatever feels right for you...

.

Thank you so much, yes I am on Facebook, and will search for the site. I reread what I typed and I think I typed when I was still in a daze. It's stage 0, but grade 3, so they recommended doing the surgery sooner rather than later. I really wanted to postpone all this til fall, but have scheduled it for May. Yeah, I've heard the drains are the worst part, ugh! But you're absolutely right, we will get through this!!

 

[kirstenb1]

Feralpeg, I'm praying for you and Kendall. I'm so sorry she's having a hard time getting in to see the MS specialist.

 

[Feralpeg]

i am so sorry ...

what's so terrible about your story is that the MS expert won't take your daughter until she's diagnosed...
i don't get that at all.......that seems so cruel....why won't the expert take her for diagnosis?...
there must be another MS expert somewhere in your area...
do you have any major medical centers around you?
maybe they have someone there?

It's just crazy getting in to see specialists in this area. One neurologist I spoke to won't treat anyone with MS. If I can't get her in soon, I may try taking her to Mayo Clinic in Jacksonville. Not sure how to go about doing that, but I'll find out.

Thanks for your support, everyone!

 

[Pea-n-Me]

It's just crazy getting in to see specialists in this area. One neurologist I spoke to won't treat anyone with MS. If I can't get her in soon, I may try taking her to Mayo Clinic in Jacksonville. Not sure how to go about doing that, but I'll find out.

Thanks for your support, everyone!

A lot of the bigger hospitals make the process very easy - just call!

 

[disneyholic family]

Thank you so much, yes I am on Facebook, and will search for the site. I reread what I typed and I think I typed when I was still in a daze. It's stage 0, but grade 3, so they recommended doing the surgery sooner rather than later. I really wanted to postpone all this til fall, but have scheduled it for May. Yeah, I've heard the drains are the worst part, ugh! But you're absolutely right, we will get through this!!

here's the main group (flat and fabulous) - i hope the link works
https://www.facebook.com/groups/FlatANDFabulous/

.

 

[Feralpeg]

Good news! The neurologist agreed to see Kendall. I only spoke to his secretary, but she said he reviewed her records, scans, etc. and said he needs to see her. They had a cancellation, so she has an appointment on Friday. Scary? Yes, but we need to know!