Dis Breast Cancer Survivors Part IV - GAGWTA

[fortwildernessishome]

Just a quick update......this week has been one step forward, two steps back. We saw the oncology surgeon on Monday, he explained everything in detail - basically it is very risky and very complicated. But, it seems to be the best option at this time. However, after looking more at my last CT scan, he is seeing what might be bone mets, which would make me ineligible for the procedure. So, we are now waing for a PET scan, but my insurance seems to be holding it up.

So, currently in limbo, may or may not be eligible for this HIPEC procedure, may or may not have bone mets, may or may not still even be interested in the surgery. Blah. I'm very cranky. And just really mad at the world right now.

Just want to say I am so very sorry and will send positive thoughts and good wishes your way.

On a brighter note, I absolutely LOVED your vacation photos, thanks for sharing.

 

[fortwildernessishome]

robinb - glad thing are going well for you. Sounds like you have a good plan for the weight. Hot lashes are a pain for sure. The joke everyone always says to me is they are like going on your own tropical vacation.

Gasleepingbeauty - glad the drains are out. Yes ins. never makes it easy on the patient for sure. I have had to fight mine too for some biopsies and even the surgeon had to fight for one of my surgeries when they wanted me out in a day and i stayed in for 3 days. There is enough on your plate and then you have to throw in being your own advocate to the mix. So frustrating. Hang in there!

Well I am about to throw up but I prayed instead, Dh took ds to the ortho. He said they misread the x ray. So now he has a cast on and is suppose to be non weight bearing. They will recheck in 2 weeks. I dont know how he will get around the college campus. He will also need to get some rides. Ds2 can take him 2 days but I dont know his schedule.

The throw up part is that the dr. asked him to see his arm span. He said he had the classic signs of the syndrome my sister died from and now wants him to have a echo. I had him have one once and it was fine and we even went to one of the best geniticists in NYC and she said they dont have it and I dont either etc. Worse is there is no cure for this and if its bad the average age is 40 etc. I know they say you can have symptoms like it and not have a full blown case etc, so i am hoping this will be the case. My heart is breaking and I hope things will turn out ok.

So sorry about your son. I am not sure what they are checking your son for, but it sounds like it may be Marfans Syndrome??

Last Fall (2012) my now 20 year old son was tested for it. I too was very worried. I had never heard of the syndrome, but the more I learned my son had every single symptom, extra long arm span, tall, long thin fingers, and the most pronounced thing, was that his chest has always been basically concave. His chest basically goes in at center. He had all sorts of tests, including the echo. I could barely function, I "knew" he must have it. However, he didn't/doesn't. I am praying that your son gets the same good results as my son did.

Just thinking back to the Fall of 2012 almost gives me the hives. I had, had a difficult oncology appt. (turned out fine in the end.) We had just returned home from a big western vacation that included a few days at Yosemite National Park and had unknowingly been exposed to the deadly Hanta virus. I was getting daily e-mails from Yosemite about the developments. The Hanta virus can have a six week incubation period, so we were on pins and needles waiting and wondering if any little thing was the first Hanta symptom. Obviously, we were all fine in the end, but I believe something like six people did die from being infected and many more sickened. I had a mammogram that showed up "something" that needed further testing and then a six month watch and wait. So I was worried about oncology stuff, the Hanta virus, a wait and watch mammogram, THEN found out my son may have Marfans syndrome. It was such a tough time, but in the end everything turned out fine. I will be thinking and praying for you while you wait for results.

 

[snappy]

Fortwildernesshome, WOW! That was way too much to deal with at one time. I guess we are stronger than we realize?

Linda, thanks for giving us an update on your dog. Your vet sounds awesome. I hope the new meds help.

Thanks for asking too about Snappy. She had a good week after a bad weekend last week, although still having problems getting her to take the med for kidney failure. I am patient though. Lots of short walks as it definitely increases appetite. I take it one day at a time.

I am a bit preoccupied with helping DD18 and her 3 friends figure out living arrangements for the fall. She has decided to go to school here, at LSU since she was admitted to the Honor college. She does not feel comfortable with dorm living though which I think may be a mistake, I am just not sure. She kinda walks to a different drum. Has 3 good friends (all having been to disney with us) who are likeminded. There are a lot of choices here apartment wise but they are filling up fast. The other parents are dragging their feet, and DD18 is anxious, thus I am trying to facilitate. I really don't like being in the middle.

We are trying to be economical too in what we choose, so they will not be in the penthouse student apartment version, lol.

I think I am too old for this.

Started on my Fosamex yesterday. Ready to be put out to pasture?

GAGWTA!

 

[grwrn]

Just found this board as I just recently joined Dis Boards to gain info before my WDW trip in April.

My story is...

I had my first and only daughter 1/03 and breast fed her for 14 months. During this time I did not perform self-breast exams. Five months after weaning her ( I was 34), I was lying in bed channel surfing when I stopped on a show about cancer survivor stories. I thought it had been 5 months now and my ****s should be back to normal now and did a quick SBE (self-breast exam) and I noted a lump on my right lower breast almost on my chest wall. I am a nurse practitioner, so waited until I had a period and my lump didn't get sore (bad sign) during this time so I went to my GYN.

I had a mammo and breast US and the radiologist didn't like the way the area in question "shadowed" so I had a biopsy and it was cancer.
I then had a lumpectomy to stage it. They didn't get clear margins so recommend a mastectomy which I had no problems with and told them to document what ever that had to (for insurance purposes) to get the other one off too. I didn't want to go throught the rest of my life feeling my breasts everyday worrying about lumps that wasn't there, KWIM?

It wasn't felt to be invasive at that time so I opted for a skin-sparing double mastectomy with TRAM flap procedure. I had the blue dye injected into my old tumor site before surgery and during surgery and I had 11 lymph nodes checked that were negative! My surgery was 11 hours with both a surgeon and plastic surgeon doing my surgery as I had the mastectomies and reconstruction done at the same time.

Because I was lymph node negative and had double mastectomies, my ONC felt I didn't need any adjuvant therapy such as Arimadex/rad/chemo. I just had my 9th anniversary 11/13 and I have annual breast MRI's and so far, so good.

Sorry so long, but I tell my story to hopefully help guide others in a similar situation.

 

[kofslinky]

CherylDan- I hope things get straightened out with your insurance soon! It can be such a pain! My sister is dealing with her insurance- her GYN want regular testing (mammo and MRI alternating every 6 months) because I was diagnosed so young, but because I was BRCA negative they don't want to pay for it, so they're trying to get my oncologist to explain to the insurance why they need to pay for it. She goes through this every six months and I feel bad about it. I hope yours gets straightened out nice and quickly!

luvmarypoppins- I hope you get answers about your son soon. Prayers for good results!

grwrn- Welcome to the group. I'm glad you found that lump when you did. Sounds like you're doing well! I hope things keep going well for you!

I'm glad to hear that pets are doing better! I hate when my pets get sick, but it sounds like everyone is making the best of it.

Quick update on me. For the first time since August 27th, I do not have anything taped to my body. That's right- the wound from hell has finally healed up!! I've got quite the scar, complete with funky indent, but it is finally closed up. It still has its moments when it's sore, but now I can focus on getting the scar tissue happy. I am so excited to finally be over this wound!!

I can take the next month and a half and actually enjoy myself. I'm not going through chemo, I'm not visiting a doctor until the end of February, and I just have to deal with this stupid lymphedema (which I hope will finally start to get better now that my body isn't trying to heal a hole). I've got a new camera toy to play with (new 50 mm lens will be arriving very soon), and our MagicBands are in the mail for my trip in February. I wonder if I can spend this month being a "normal" person? I haven't done that in so long I don't think I remember how!

I hope everyone gets great news in the near future! We all deserve it! GAGWTA!

 

[Pea-n-Me]

That's great news, koflinky! So glad that worked out. What a nightmare! You dealt with it so well, though.

Laurie, I was the same way as your DD, and I think my DD is that way as well. I stayed in my sister's dorm and I knew it wasn't for me. Good luck with that. And hugs to Snappy.

Welcome, grwrn. Sounds like we were on the same timeline, almost. I was diagnosed in 2003, also. Finished treatment in 2004. Glad to hear things are going well. You were fortunate it was not invasive and your nodes were clear! Mine was invasive after a normal mamm just 11 months earlier, with two nodes positive. Did the whole gamut, but with a lumpectomy, since the cancer was relatively small and confined to one area of the breast. In part I chose that because I had twins that were just turning 6 at the time, and was working (a nurse, also) and knew I'd need a lot of time off as it was for chemo/radiation. Knock on wood, so far so good. If it comes back in the breast, which it may (5% recurrence rate per year, and it's been 10+ years), I'll be doing a double mastectomy, too.

 

[snappy]

Kofslinky, I am happy your wound has healed. I take it that you can massage the scar area and loosen the tissue up so it moves. That is important. Glad you will be healed for your upcoming WDW trip. You will have to let us know how the magi bands thing goes.

I hope the lymphedema swelling goes down. I was told to hold the affected arm over my head some to help fluid drain after a few months and the surgical wound under the arm from removing lymph nodes was healed. I actually continued to put my arm up for years afterwards.

Grwrn, I had a single mastectomy in 2004 and free tram flap in 2006. A lot of surgery, isn't it, even more so with bilateral. My reconstruction was 2 years later though. I bet you have great results, mine is fine for my purposes anyway.

I guess we are on a similar time line.

Glad you posted, and joined the party here.

Linda, I suspect dorms vary from place to place but the LSU ones are rather notorious. Although I think the Honors College one is ok. DD18 is not convinced. Hard to know unless you spend time in one. I am not sure these student apartments are much better but at least she will have a kitchen to do her vegan food thing.

GAGWTA!

 

[grwrn]

Thanks for the welcome ladies.

 

[CherylDan]

Hi ladies, busy thread today!

Kofslinky, enjoy your normal person time! . Sounds like you will be able to put that new camera to good use next month.

Grwrn, welcome!

Linda and Laurie, glad to hear the pups are hanging in there!

LMP, hope your son gets answers soon. Waiting and worrying is so hard.

GaSleeping, I'm sure you are thrilled to finally have the drains out! I remember absolutely hating those things. I hope your insurance issues are resolved quickly.

I had another fluid drainage procedure yesterday......they took out 6 liters!
LOL, my DH keeps telling me I look like I've been deflated! That's about how it feels. Im still a little sore today but much better than yesterday.

I've been freaking out about the possible surgery, but a very wise voice of reason advised me to put any decission on hold for right now. Thanks, Linda! . So, I'm giving myself a 24 hour time-out..... I will be a Google free zone!!


GAGWTA!!

 

[smiley_face2]

Lmp... praying for you and your son
Cheryl....praying for you too Dr Google should be banned!!
Very quick pop in here to leave a couple of pics and say we are having an amazing time!! I am sorry Disneyland, but it's going to be hard to get any money out of me in the future!
Picture of me and hubby on the first night we arrived. I had been to grand daughters birthday party 2 days before we left and found out some of the kids came down with a bug that night. About halfway through the flight it hit me and I had a horrible time. Ended up spending most of our first day here in bed with a fever, vomiting and the other end too.... aching and I had a flu shot 2 months ago! not fair!! especially after getting sick at the end of our trip at the beginning of December on the way home Thankfully it left as quickly as it came and I made it out of bed in time to hit the beach for sunset, and hubby had a dinner We went snorkeling with turtles, went to an amazing arts and craft fair today where we bought everyone at home something beautiful and hand made for a gift, have done lot's of swimming, had some amazing meals....I do not want to go home! Our room is awesome, the view is unreal! looking right at diamond head and out to the ocean, the sun rises in the morning and we can watch it from our lanai.... I am a happy girl!

 

[snappy]

Hi ladies, busy thread today!

Kofslinky, enjoy your normal person time! . Sounds like you will be able to put that new camera to good use next month.

Grwrn, welcome!

Linda and Laurie, glad to hear the pups are hanging in there!

LMP, hope your son gets answers soon. Waiting and worrying is so hard.

GaSleeping, I'm sure you are thrilled to finally have the drains out! I remember absolutely hating those things. I hope your insurance issues are resolved quickly.

I had another fluid drainage procedure yesterday......they took out 6 liters!
LOL, my DH keeps telling me I look like I've been deflated! That's about how it feels. Im still a little sore today but much better than yesterday.

I've been freaking out about the possible surgery, but a very wise voice of reason advised me to put any decission on hold for right now. Thanks, Linda! . So, I'm giving myself a 24 hour time-out..... I will be a Google free zone!!


GAGWTA!!

She is wise, isn't she?

 

[snappy]

Smiley, glad that bug was a 24 hour one.

Thanks for the photos, I almost feel like I am there. I have always be partial to the beach, but the color of that water, I think it beats even Destin, which I thought was the best.

Enjoy your time. I just knew it would be wonderful.

thanks for sharing it with us in real time.

 

[luvmarypoppins]

grwrn - Welcome. The ladies here are a wealth of information and are supportive and caring. They inspire me. I have thy ca and just tag along here so I cant comment too much.

Cheryl - glad you feel a little better after the fluid drainage. Good you listened to our sweet Linda, the voice of reason.

smiley - love, love your pictures. The turtle is my favorite. Sure dont see those on the beach around here. Just horseshoe crabs if anything.

Laurie - glad yur dd is planning things in the right direction. Sure you are a pro at it. I hope her room mates get on board.

koflsinky -so glad you get a little medical vacation. Where are you staying at WDW? Also interested to know where you are eating. You know I am disney food obsessed, lol!

fortwildernss is home - yes it is Marfans. Too much of a nightmare for me. Unfortunately I am too well schooled in it due to my sister and the funniest thing is that the national organization is right in the next county from me. I found that out when I was living in Texas.

Well ds is going to the dr. tomm. Its not his reg. dr. Its a female whose speciality is womens heart issue, thyroid etc. Its a big group. They asked him if he wanted a male or female. His dr. only sees patients once a week now and they advised him to pick a new dr from the group. He took this one because the visit could be tomm. Dh is taking him. Good because we are suppose to get 8-12 inches of snow. Ds2 is our snowblower he cant really do anything now to clear the snow out with his broken foot etc.

As long as this dr. ordered the right tests and gives the stuff he needs I will be happy. He can switch drs. later. If he likes her of if dh goes in with him I think I might ask him to do that to see if she is better than my news internist etc. Although my endo says she doesnt like the way they do things in the family practice etc.

So we start the journey with ds. One I would prefer not to be on. But I am so glad we have faith. Dh and I were talking about that. Without God and though all my cancer etc. if I didnt have Him I think I would have not taken things so well.

Also now my dh tells me the ortho said even though ds had an echo at 2 that was really too early because it manifests more in teens etc. I agree. I have always mentioned this to all his drs. and no one has ever said anything etc. sigh.

GAGWTA

 

[CherylDan]

LMP, I hope your son's doctor appt went well, and that he likes her. Sorry that he is having to deal with this.

Smiley, thanks for the update and pictures! Beautiful! So glad you are having a great time....can't wait to see and hear all about it.

Had an appt with my oncologist today to discuss the PET scan and plan of action. Apparently there are mets showing in my bone marrow, and lymph nodes on my non-affected side. Since the mets are now outside of the abdomen, I am no longer eligible for the surgery and will be starting regular chemo next week. He has also ordered bone scans and a MRI to be sure of everything we are dealing with. So........chemo, round three. We will do chemo for two months and then a CT scan to see how it is going, and take things from there.

I told DH I thought we should escape the frigid weather we are having and run away next week to the beach......seems like a good plan to me......a pitcher of frozen margaritas and a straw - all for me.

 

[snappy]

Cheryl, I am sorry you are dealing with the bone marrow and node mets, and face more chemo. I do think your plan for a trip to thaw out is a solid one.I am sorry the IP chemo is off the table but you seemed hesitant about facing it. I am thinking of you darling.

I hope the rest of you in northern climates are faring ok. MaryAnn, I hope you have some answers about your DS.

Believe it or not we have snow/sleet/ice even down here today that started before dawn and is continuing. Schools are closed, DH went to work so I am anxious for him to get home (on his way). No reliable treatment here for roads and there have been problems, interstates closed. It is just a damp cold mess and not sticking to the ground so it is not even fun.

I am supposed to spend tomorrow with my friend Cindy in New Orleans, attending the ballet and going to a nice dinner. It is supposed to warm up. I am not going to venture out unless things improve int he am.

On the positive side, since I was stuck in the house, I spent a lot of time on the phone with a certified financial planner discussing retirement stuff, and also completed and filed the applications for financial aid required for DD18's scholarships.

Not fun but I had pretty much projected our 2013 income tax stuff and I have done this financial aid jazz before for her older siblings so I am not intimidated by it.

I was procrastinating though, so I feel like I accomplished something. It wasn't a party though.

GAGWTA!

 

[Feralpeg]

Cheryl, I am so sorry to hear this. I will definitely be cheering for you from here!

LMP, Thinking of you and your son.

I thought I'd beat my cold and was on the mend. Nope! I think these crazy weather swings are doing me in. I've been so tired the past few days. I'm sure my cold is trying for a comeback. Yuck!

I know I shouldn't complain. The weather here is nothing compared to what most of you are experiencing, but I'm not used to the cold anymore! For me, this is way too cold. Bring back my 70s!

Thinking of you all!

 

[luvmarypoppins]

Cheryl - So sorry to hear about the bone and node mets and that you have to start the chemo again. Wishing you all the best as always.Hang in there sweetie! My thoughts and prayers are with you. Yes the beach and margaritas sounds like a great idea. Its freezng here too.

Well tomm dh is taking ds and I for blood tests. More snow and its so cold here. I just stay inside.

Ds3 took ds2 to the dr. It worked out well. He went with my mom list. Also ds3 actually liked her better than the md he has so he might switch to her too. She did everything on my list So ds has scripts for meds, blood tests, got a flu shot and echo script. Ds2 did tell me that he saw the dr. make a not so good face, kind of like freaked out, when she saw ds hands. Hmm. She says she feels he has some of the signs of the syndrome.

So the show is on the road so to speak. Next is to do echo around his college schedule and or ds schedule. Also the ortho too. They are trying to figure out why he breaks his bones so much.

My leg is a little better. Not using my grandmas walker so that is good.

GAGWTA. Have a great week end everyone. Thinking of you all.

 

[kofslinky]

koflsinky -so glad you get a little medical vacation. Where are you staying at WDW? Also interested to know where you are eating. You know I am disney food obsessed, lol!

We're staying at Old Key West, and I can't wait! (As I type the snow is falling outside the window. I know it's supposed to be "pretty", but we're going to get a dusting to 2" today, and right now it looks like it's coming down at quite the rapid rate, which makes me sad.) I've been to the resort several times (DBF's dad has DVC there), but I've never stayed there, so I can't wait. We're doing a couple breakfasts, one at Olivia's and one at Kouzzina. I also know we'll do breakfast in Sunshine Seasons- we both love breakfast there! Dinners are at California Grille (never been!), Il Mulino (never been!), Citricos (I've never been, DBF has), and Brown Derby (LOVE IT!). I absolutely cannot wait to get there!! I hope Florida warms up a little before we arrive, but it has been so cold here that I think 40ºF would be warm!

I'm glad your leg is starting to feel better. I'm sorry you have to go through all this with your son, but I'm glad he likes his new doctor.

CherylDan- I'm sorry to hear that you have to go back through chemo. Keep your chin up! I think a trip to the beach sounds like a wonderful idea!

snappy- Sorry you were stuck in the house, but at least you got the financial stuff done!

I hope everyone is surviving the winter so far. I haven't turned into a human popsicle yet, so I suppose that's a win. Good news- it's only 54 days until spring!

GAGWTA!

 

[CherylDan]

Kofslinky, your plans sound fantastic! Sounds like you have a lot of new places to try - always fun. Enjoy!

Laurie, wow, snow/ice for you must be quite rare. I guess nobody is escaping this awful winter! I see we have been issued a wind chill warning for Monday & Tues - forecasted to feel like 35 to 45 below. pretty sure I will not be venturing out.

LMP, good news that you've been able to do away with the walker! I hope your son gets all the answers he needs soon.

Peg, too bad about the lingering cold.......feel better soon!

Thanks for all the good thoughts and well wishes.....I'm feeling ok about things at the moment. LOL, that seems to change from one day to the next though.

Well, I was not successful in convincing DH that we should run away to the beach next week......something about him having to go to work . BUT, we did come up with a plan just as good!! I just booked a trip over presidents day weekend to San Diego!!! the timing with chemo should work out well since my treatments will be every three weeks on a Thursday - we will be gone the weekend before chemo, so I should be feeling fairly ok by then and I will have only had one treatment at that time. Soooooo, we decided to go for it. We are going to stay in Coronado again. I'm so excited!!

We spent the day at the condo today, things are coming along, it just takes time. Had to make a trip back to Ikea, seems they left a few cabinet doors off our delivery. But other than that we have been very pleased with the cabinets. Hopefully we will be able to wrap things up next weekend.

GAGWTA!!

 

[Pea-n-Me]

Cheryl, sorry to hear about your results. In a way you're probably relieved not to worry about that big surgery any more, right? Your trip sounds great.

This cold weather and snow and ice is getting to me, too.

lmp, I hope you get some answers about your son. Your grandmother's walker, omg. You are smart to use it, though. It's funny, I bought my mother (88) a walker/seat type thing many months ago and she absolutely refuses to use it. She just started using the cane I bought her years ago but basically she holds it up in the air while fiddling with her pocketbook and such. She's past a cane, though; has had quite a few falls in recent months. Housebound this winter as she's afraid to fall on the ice. I also bought her a wheelchair because she now needs it when we take her out. I'd borrowed one a couple of times and it was a PIA. There is a company called _____ that has these things at a reasonable cost. The wheelchair fits in a bag, which is nice. Anyway, thought it might be helpful to look at if you need any of this stuff.

Laurie, how is Snappy doing?

kofiinky, have a wonderful time at OKW. You're bringing your camera, right?

Peg, being exhausted after treatment is normal. We don't realize what a toll it all takes on our bodies. Give yourself time to recover. Be nice to yourself. Rest when you need to, and balance with small increments of activity. I'm so glad you're done.

smiley, I really love that pic of you and your DH on the beach in Hawaii. Despite all you've been through, your spirits look connected, happy and strong. And I loved the turtle, btw - it must be very cool to see something like that right there on the beach! We occasionally have a small seal on the beach, but that's about the extent of it, lol.

Things are going pretty well here, for a change. It just seems like almost every week something is going on with someone. Fortunately it's been nothing truly serious (with people, anyway). DD is recovering nicely. Has a few stitches (out of the hundreds) that are coming through the skin but we'll have those fixed this week. Some of the swelling has finally gone down. She feels great. DS's knee is almost all better.

My girl (dog) is hanging in there. Since treatment for her UTI, which was redone a second time, she's feeling back to normal other than the legs not working. We're just treating her as always with accommodations for her now disability. She is happy. It's funny, in deep snow she can't fall over so it's like her legs are ok in it so she's still running after her ball in the yard. So the snow has been both a curse and a blessing. Taking her out at 3am to pee has been "interesting". Before she began having this problem last fall, we had decided to get a second dog. A small one this time. Long story in that we tried to rescue on several occasions, but it wasn't working out. (Dogs were biting my dog, basically.) So we are getting a puppy. I'm not sure when yet, but maybe in the next month or two. I have never had any type of dog besides a GSD, so this should be interesting. I'm sure I will get another GSD in the future, but for now, it'll just be my girl and the pup. I have the feeling this may end up being my DD's dog in many ways, as part of our motivation was for her, but I will be strongly involved with training and such, as we don't want any spoiled rotten dogs here (other than our girl, who we've been spoiling shamelessly now). So we are all very excited. We know our girl will be ok with it as we will treat her as always and she will adjust. (Ironically, she was a pup when our last GSD had what she has now, and it all worked out.) I think it will help ease some of our sadness when she goes, too, to have another dog in the house already.