Dis Breast Cancer Survivors Part III - GAGWTA!

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Sha, YES! A pergola is exactly what it was! But I have never heard that term before, so no wonder I couldn't come up with it! :rotfl2: I learned something today! :)
 
PNM- OH NO! I am sorry to hear about your Mother. Did she eat at the same place you thought your daughter got it from? I hope she doesn't have it but prayers for your family anyway.

Sha/Jacks- I learned something new too!

LMP- :hug: going out to you. I hope the pain subsides soon. You may want to think about calling the Doctor's office. All that pain doesn't sound good.

OK so yesterday all I did was cry. I scurried around to get my treatment early and it turns out that the new company will take us over starting 10/19. So any treatments after that date will be under the new company's insurance which is totally awful. The family deductible for the year is $5,000. My treatments, the drug alone is $60,000.00 and the insurance (IF they pay for the drug) will only pay 80% :sad2:. We keep praying but we don't know how I am going to do this. Everytime I think of it I get weepy and upset. I thought I had it all covered for now. I still plan on having the treatment early because I'd rather pay for 2 treatments than all 4. Pray for me.
 
Oh Linda!! will add your mom to my prayers. :hug:

Had an appt time/date mix up for mom. I went ahead and filled out paperwork, so they did her H&P while we were there. She came out and said that we are to wait. Dr. D was looking to leave early for his own appt. He took us anyways. Mom has 2 deep brain stimulators... and has a generator in some of the left breast tissue. Makes a mastectomy hard. lumpectomy with radiation... lumpectomy with mammosite (direct radiation).... Mom was looking at the last because of the generator. Dr. D called mom's neurosurgeon about the generator and radiation. Dr. R said that they can move the generator... so it appears mom is now going with a mastectomy. Will keep you posted for when and all. It will be a couple weeks I think. First of course to move the generator. :grouphug:
 
Linda, not your mom, too!. I did not see this last night. I will pray for her. Is it definitely diagnosed as ecoli as well?

May the Lord give you the strength to go the distance again.

Candy, that absolutely stinks about the insurance. Usually there is an out of pocket limit on the policy. Ours is about $8,000 right now, and that includes the deductible of $3,850 (family). It helps a little. Inquire about it.

Sha, your mom has two surgeries then. It seems to be moving fast, two weeks. Will she do radiation if she has the mastectomy? Chemo, or is that yet to be determined? I can't remember if she had chemo previously. If so, can they do a different cocktail?

so many questions.

I got an email from a friend yesterday, she was just diagnosed with thyroid cancer after multiple (at least 5) biopsies. I immediately called her and am trying to help her with surgeons, etc. It sounds like she has had it for a long time and was mis-diagnosed. It sucks. She will have to be checked for mets. The first CT scan she was given no instructions, so the results are not definitive (she ate right beforehand). She is very frustrated that she still is in the dark about what she is facing. It sounds like multiple nodules on both sides. I can't imagine that her doc never checked her neck for nodules since she had lots of hyperthyroid symptoms. Even she says her internist was a dud but she never changed due to the difficulties of changing docs.

One lump is quite large and causing her issues due to its location. how could this be overlooked?

ARGGHH! I am just incensed.

I am recommending my surgeon as he is an oncological surgeon, the only one I know of here. Should she go see an oncologist first? That is what the radiolgist who did the latest needle biopsy told her.
 

Candy :hug:

LMP :hug:

Honugirl, how are you doing? :hug:

GAGWTA

Sha, how are you holding up? Could you do me a favor and briefly go over the history of your mother's BC? I find it hard to follow details online sometimes, I'm used to having a chart to flip through if I forget details of any given case; here it's harder, as you well know. :laughing:

Did we ever hear back from Monique?

Today is the first morning in a week and a half that I've had a few moments to myself and not been completely exhausted. I took a break last night from the hospital scene and DH and I attended a Feng Shui class, which was our bday present to eachother this year. I yawned through most of it :lmao: but it was fun nonetheless. Have any of you here ever looked into it? It's about the "energy" of a home and how to best utilize it. Interesting.

My mother had a rough day yesterday, still feels awful. My brother pulled hospital duty last night which was good; I'm headed back in this afternoon. I'm hoping she has a better day today and we get culture results back. Thank you all for your thoughts and prayers. Will keep you updated.

:grouphug: :flower3: :wizard:
 
Good painful morning ladies

I just took 2 pain pills as my whole digestive system is backed up. That is another problem in itself, but at least I dont have a bowel obstruction, yeah. I take at least 27 pills a day with all the meds etc.

Linda - praying for your mom and dd

Moinique - thinking of you too. I dont think she posted her results etc.

Melissa - hope you are o.k.,

Cheryl - happy belated anniversary

Lisa - I was thinking of you and think you would make a really cool recreational therapist or assitant or physical therapy assistant etc. Have you ever thought of something like that?? Using your encouraging, medical knowledge etc. etc.

Laura - hope you are healing. In order to relate to you more sista, I watched the ostomy training videos in the hosp. The one little girl was cute with red hair and the other was a mom, who after going to the bathroom, showed her going out to her kitchen to feed her twin girls in hgih chairs!!

Candy - :hug:I am so sorry that you have to be stressed about all this ins. stuff with the chemo. Is the ins. what all the hosp. employees get? If so, can a social worker there give you any insight etc??

Sha - so sorry your mom has to have 2 surgeries? She is so blessed to have you.

Elizabeth - I was watching some football game and they had the Big Wheel and Big Tex in the background. I talked to the tv and said, I miss you Big Tex!! :rotfl2:

When I feel better I will post my hospital story etc. Some parts were funny, some scary etc. Never a dull moment though.

Laurie - I am concerned about your friend too. Are they ONLY doing a ct scan to see about met. That was only my starting point. I orginally went to a thoracic surgeon and she ordered a pet scan to especially check for lung met. 5 biopsies and no dx, that is something like what I went through. I later found out it was because my cancer was wonky and the rare kind which doesnt test well or definitive pathologically with only a small needle biopsy amount of tissue etc. For the surgery myself I went to the ENT cheif surgeon. with the thoracic on call for the or. They said this is necessary if the thyroid is too low in the chest etc. the thoracic has to cut the chest a little which didnt have to happen to me ptl. Also my difinitive biopsy was not the needle biopsy but a horrid core biopsy, the one where I almost fainted, like a caulk gun sideways in your neck. I could type more, let me know the specific questions. My surgeon now for the stomach does surgical oncology and I would never let him operate on my neck etc. So make sure she chooses the surgeon well. Ask away.

GTAGWTA. Thinking of you all.
 
When I feel better I will post my hospital story etc. Some parts were funny, some scary etc. Never a dull moment though.
I have some, too. The environment is second nature to me (I worked in both hospitals we've experienced this week and last), but it's always interesting being on the other side of the bed. I actually got yelled at the other night - my coworkers had a great laugh about that. :eek: :lmao:
 
GAGWTA all!

Thanks for asking about me. :lovestruc

LMP, funny you should say that, yes, I've thought about it and I may do the 2 year PTA (physical therapy assistant) program at the community college here. We'll see.

Honestly, I'm hanging in there the best I can. I'm in a really deep depression right now. The last time I was this low my grandma had just died. So in that respect, I'm not sure where to go or what to do for that. I am going to go to Seattle for the weekend and spend some time with some good friends who kind of know what I'm going through.

I've decided that next month I'm sticking myself in my endos face and I'm not leaving without a treatment plan. So, I've got ressies at the Paradise Pier Hotel at Disneyland with 3 day park hoppers. Another Cushie has an appointment the same night as I do, so she'll pick me up and drive me into Beverly Hills for it.


I'm trying to find something really special to do at DL. I want to make this a really good trip. Who knows what will happen after. Any good ideas?
 
I will be at the end of my third week post-op when we are set to fly to WDW in Dec. It is a simple mastecomy, no node biopsy. I have DCIS.

Any advice? Should we cancel the trip?

Just got my surgery date today.
 
I will be at the end of my third week post-op when we are set to fly to WDW in Dec. It is a simple mastecomy, no node biopsy. I have DCIS.

Any advice? Should we cancel the trip?

Just got my surgery date today.

I would think you would be ok. Are you on the youngish side? That helps!

My only concern would be if you still have drains in. I did not have my last one pulled until after a month. If you are a small size, you are less likely to still need the drains that long. Did you discuss the trip timing with your surgeon?

It does make a difference not having the node dissection. that was the PIA for me.

I can't think of a better thing to have a nice trip to look forward to. It will also be cooler in a few weeks.

One thing to consider is that you won't be able to wear a true silicone prothesis at 3 weeks out, so I light weight form would be advisable to keep from putting too much pressure on the scar. I assume you are not doing immediate reconstsruction?
 
Welcome disneyprmommy - no advice as I have a different kind of cancer, just a :hug:and wishing you all the best. I am going dec. 9th and will be 2 months post op and I am not planning on doing anything fast etc. It will just be my dh and myself.

Candy - Thinking of you during treatment today

I am asssuming Monique is ok since I just saw her post something on the cb?

Lisa - How about a nice dinner? I dont know anything about disneyland

O.K. I definetely think a trip to the er is going to be in my week end future. The ducolax didnt work, I dont feel like eating, I am feeling semi nauseous, I have a terrrible pain on my L side, hmm, I really dont want to say the word bowel obstruction and ng tube again. I was already crying thinking about it. I am having dh call the drs. sec. in the hosp. after his meeting. He needs to call for the med anyway. I am beside myself and praying alot for sure. I just cant face that horrid tube again. I guess the minimum would be an ultrasound??

Ds fixed his horrid mohawk, hooray!!

GTAGWTA. Thinking of you all.
 
I will be at the end of my third week post-op when we are set to fly to WDW in Dec. It is a simple mastecomy, no node biopsy. I have DCIS.

Any advice? Should we cancel the trip?

Just got my surgery date today.
Welcome to the thread.

I really don't know how to answer this, it's so individual.

My best advice would be to see how it goes week to week, and keep an option open for postponing if you run into problems or aren't feeling your best.

Good luck with your surgery. :grouphug: Let us know how you do.
 
lmp and honugirl, how are you both feeling today? :flower3:

Sha, how is your mother holding up? :hug:

GAGWTA
 
Did you guys see this on the news? Unreal. Poor girl. :sad2:

http://www.cbsnews.com/stories/2009/05/19/earlyshow/health/main5024777.shtml

One thing I did notice when googling for information, was this link, which says triple negative = environmental. :confused: That is not something I've ever seen before and don't know if it's true - but being triple negative myself it certainly caught my attention. Will have to keep my eye out for more information on that. (It's not like that particular site is a mecca of accurate medical information, LOL, but I wonder where that information came from? :confused3 )
 
lmp and honugirl, how are you both feeling today? :flower3:

Sha, how is your mother holding up? :hug:


See my post #611. Well dh called and talked to the sec and she talked to the dr. for me. He is not too concerned about me not going to the bathroom, he has not left for the conference yet. He said to have me keep drinking lots of water and take ducolax. OK. I am on my 3rd water bottle and thats alot for me!!

Did anyone see the Katie Couric segment on the 4 sisters from Mass. with the breast cancer?
 
Good evening ladies

Well last night dh spent alot of time on the phone with some dr. from the hosp. They cut my pill supply from 90 to 18 total!! And the surgeon is going away. He begged and pleaded and got the dr(not mine, just a hosp. resident on call I think) to give me a total of 36, so I am suupose to make these last till the surgeon gets back??? You have got to be kidding me!! Dh said he would call and ask for more, umm, I dont think that will be happening. All I can say is I am glad I have a nice little supply of regular percocet with tylenol in the house. This is unreal. All they care about is sending you home and forget about managing your pain, you make do on what we give you etc. It doesnt help that the surgeon will be away all week. I am also giving him a piece of my mind when he gets back about the whole pain management process. I think the dr. who precribed it (the new 18) might be the one who told me to get out of bed in the hosp, was never in the operating room with me etc. Oh gheesh!! Thank heaven dh got another resident instead of that jerk again.

Good news. I used the walker and got in the car and took a little drive with dh to the bank and bagel store. It was cloudy and pre stormy out but it was good to see life beyond these 4 walls and the potholes killed my stomach for sure!!

GTAGWTA. Have a great week end.
 
Linda - I'm so glad your DD is on the way to recovery and I hope your Mom is feeling better also. I hope you are doing well - this has been such a difficult time for you - I absolutely can't stand it when the children are ill. I did see the article about the 10 year old with breast cancer - very scary!

LMP(Maryann?) I can't believe all the problems you have had dealing with the doctors. I hope you get through this weekend with very little pain - so glad you could get out for a short jaunt!

Honu - I know it's tough for you but hang in there and try to take one day at a time (don't you get tired hearing this?) Hopefully, these rough roads will smooth out for you.

Candy - Isn't it so difficult to have to worry about insurance when one is going through so many tough times! It is very disturbing. The MIL of a friend of mine had a kidney removed (she is 87) and the Dr. made the statement that under the "new insurance program" she would have been rejected to even have the surgery because of her age.

Laurie - hope all is going well. I wish you were going to be in WDW the end of Dec. so we could meet. If I remember well, you are planning a trip soon are you not?

Laura - take good care of yourself and be well soon.

Ann - so happy to hear how well Avery is doing.

Melissa - only 80 some more days!!!

Hugs to all, Barbara
 
LMP I am so sorry that the doctor did that to you. I was often shocked at how many doctors undermedicate women. My personal experience has been that my husband is treated much better than I when it comes to pain issues. For instance, my husband had a kidney stone and they IMMEDIATELY gave him pain meds via IV. I had an emergent abdominal issue that required surgery a few days later and they let me lay there for two hours with nothing.

Please make sure you demand that your pain be managed properly. Its a federal law I believe (maybe Linda can comment from the medical perspective) and part of your patient rights. Sorry for the rant but this makes me nuts. You heal much slower if you are not able to rest, etc.

Linda, I am keeping your mom in my prayers. Hope she is doing better!

I have been out of touch lately but have been reading this thread when I can. I wish everyone the best. :grouphug:
 
PNM- OH NO! I am sorry to hear about your Mother. Did she eat at the same place you thought your daughter got it from? I hope she doesn't have it but prayers for your family anyway.

Sha/Jacks- I learned something new too!

LMP- :hug: going out to you. I hope the pain subsides soon. You may want to think about calling the Doctor's office. All that pain doesn't sound good.

OK so yesterday all I did was cry. I scurried around to get my treatment early and it turns out that the new company will take us over starting 10/19. So any treatments after that date will be under the new company's insurance which is totally awful. The family deductible for the year is $5,000. My treatments, the drug alone is $60,000.00 and the insurance (IF they pay for the drug) will only pay 80% :sad2:. We keep praying but we don't know how I am going to do this. Everytime I think of it I get weepy and upset. I thought I had it all covered for now. I still plan on having the treatment early because I'd rather pay for 2 treatments than all 4. Pray for me.

Oh Candy, I am praying! Did you check with your state, the drug company, etc for alternative ways to pay/get at a discount? I ask because here where I live patients who have huge prescription costs can receive some help from the drug company or the health dept. Please let us know what happens!
 
Oh man, my internet has been out since Friday morning, something with all the storms we have been having.

Back up this am thankfully.

LMP, hoping you have been able to go to the bathroom. That problem is a very unfortunate effect of the pain meds. You can't live without them, you can't live with them. I don't see how with your level of pain you can decrease the pills as dramatically as the doctor is prescribing.

I had a lotta luck with mostly eatting fuits and veggies for a while after my reconstruction, lots of plums, etc. I will send you a pm about something else I used.

Linda, has your mom been released from the hospital? how is she, and how is your DD? Did the testing confirm that your mom also had ecoli?

I never eat hamburgers out but I don't really like them all that much. I guess I am just as much at risk getting sick from salad which is what I usually order. Except at Sammy's where I order the boiled crabs or crayfish when they are in season.

Barbara, we rescheduled for mid November. October is just too crazy a month for me at work. My audit starts tomorrow! I worked like a dog last week to finish getting ready. I am the accounting department so it all falls on me. At least I have reduced the time the auditors are in the office to about a week.

I booked at the Walforf Astoria for 4 nights. I may regret it but it wasn't that much more than a moderate, and a lot less than a deluxe, even with the AP discount. Who knows if we will even go or not, or if I will change our accommodations??:confused3

We probably should not go after having the expense of the new a/c and heater. Supposedly DH's employer is going to pay for the trip. Now DH says he will only ask him for the additional expense we incur. DH is a bit of a honest guy. Me, I joked we should book the castle for this trip.

I bet doing the Waldorf Astoria sounds over the top, but I did get a good deal, I think it is $627 after tax for 4 nights, plus $20 per night for parking.

The pictures of the room just hooked me in. Also, access to the lazy river. I also like having two rooms (there is a separate living room, not unlike a DVC room), which helps as DH stays up very late watching TV until he can face the nightly round with the CPAP machine.

I am still trying to talk Mom into coming with us. She seems distracted with her new hearing aids and her upcoming reconstruction implant swap and lift. She will enjoy having DD at her house while we are gone.

I feel selfish as always, but I need to get DH away from work. How many more times might we have? No one knows?
 
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