Dis Breast Cancer Survivors Part II -GAGWTA!

[Pea-n-Me]

Aah, now I understand. Medullary thyroid cancer. Thanks for the explanation. I will pray that things continue to go your way.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Melissa - I am surprised you guys don't have King cakes at the grocery store. Tom Thumb carries them here. The dimes are a very neat tradition!

Laura - How aggravating about the credit card! I am sorry you decided to cancel the cruise. Plenty of time for cruises in the future, though! We won't arrive at WDW until 8/1. I don't think I am brave enough to try 7/4!
I got an e-mail from another mom saying she thinks the band kids have some sort of competition the Saturday of DS's birthday weekend. That will be a pain in the tushy, but we will work around it somehow. If the band kids have to go home late Friday night or early Saturday morning we will figure it out.

Ann - Hoping for good news from your mammo!

Laurie - Good luck with your rental car dilemma! We have never rented a car at WDW. I am just weird that way.

Luvmarypoppins - YAY for some good news! You will remain in my thoughts as you wait for more results!

I need to call and see how Mom's first radiation treatment went today.

 

[NHAnn]

Thanks for all your good wishes....I was thinking of you all, and our friend
Beth (MinnieM3) was on my heart while I sat in the waiting room today.
She had to take a second set on the right side,supposedly for clarity --we are still not digital there supposed to be by now ....and then she came back and said "OK, you're good to go...if there's a problem you'll get a phone call in a day or 2, otherwise you'll get a note in the mail next week. " I said "huh? they don't get read now while I wait?" and she said "no, this is just a routine annual". Which is good I guess but I'm not used to that after the last 3 years of followups and such! Anyway, I see the surgeon Thursday afternoon for an annual with her, and she'll have the mamm report so I'll get more detail even if the report is all good

Luvmp--I am happy for some good news for you!! welove having you here and continue to send you prayers (and pixiedust)!!

Laura...sorry about the cruise ...and about the credit card! Yikes!!
DD and I did a girls trip over the 4thofJuly back in...2002 I think? It was HOT I won't lie. We'd go out to parks in the morning, leave well before noon for rest time, pool time, shoppingtime, naptime or a combination thereof. Back out early evening. We did 7/4 Illuminations...it was spectacular and we sat with a few off-duty AK CMs who were wonderful young people. We had fun. A blistering hot day at Disney is better than a blistering hot day at home We made sure a couple years later whenwe went in June to bring at least two t-shirts or tank tops per day. Felt better than putting on one that was sweat soaked,even if the sweat had dried

jsg...hope your mom's first rad went well....I hope she is as lucky as I was with wonderful rad techs...they truly made the daily visit for 5 weeks a pleasant experience, strange as that sounds.

Laurie...I am so sorry about your DSs experience and the worker who died.
That's a traumatic thing, even if he didn't know him well, he/you should be aware that he could have a bit of post-trauma reaction even if somewhat delayed. Keeping him in prayers too!!

Who'd I miss?!?!? GAGWTA!!

 

[snappy]

Luvmarypoppins, I am so glad all of ours and your prayers were answered. You were so sweet to post, we have been worried.

Now I understand the pain as well.

Which lymph nodes are involved?

Hoping you get back on the surgery schedule soon, once more tests are in.

Thyroid biopsies are tricky. My reading indicates that the gland has to be removed to have the definitive test. Having siad that I have had a series of needle biopsies, all clear. But my lumps have all but disappeared so I think the thyroid meds are taking care of it.

My grandmother had the more common kind of thyroid cancer, the kind that is usually confined to the gland. She did well for many years with the help of meds.

Laura, the rental prices are high for me compared to the rates back in Sept/Oct. I have a 3 night rental for about $112 with National picking up at the Dolphin.

I just have been reading CB threads (I need to stop) that say all you do is walk yourself silly.

One of DH's coworkers who lives in the New Orleans area imported a REAL king cake us. Oh my it is good.

I like the dime story too. Very inspiring.

 

[jackskellingtonsgirl]

Spoke with Mom this evening and she is doing OK. She said she has to be very still for a total of 11 minutes for each radiation session. I am pretty sure they are not actually dosing her for 11 minutes! Starting tomorrow her radiation will be at 1:20 PM every day. That means she will go straight from her lymphedema treatment to work, then leave work early to go to radiation. Sounds like kind of a hectic schedule to me. We'll see how long she feels like keeping that up.

She said her "bad" arm actaully measured smaller than her "good" arm at the lymphedema clinic today, which is good. But that was just for the top part of her arm. The part from elbow to fingers is still quite swollen. Of course she is still working instead of taking a leave like she said she was going to. She said her thumb seems to be responding to the Cipro. She has always had trouble with REALLY severe dry skin on her hands. I can remember when I was little her hands would always be cracked and bleeding in the winter. That combined with the swelling is making her hand a mess.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

luvmarypoppins- Well I'm praising God with you! I'm so glad you are with an endo. dr. who is thorough, and will get these latest blood tests done quickly so you can move ahead. Continuing prayers for you...

Ann- I guess your onc will have the results tomorrow. Will you go off the trial drug? Were the July 4th fireworks different at Epcot than the usual Illuminations? I've been there in July before, just no over the holiday. I don't know which park we'll be in that night. I'm so non-commando these days. I do know what rides I want to do early, but the rest of the day is whatever... I'm expecting lots of chill time around the pool.

Laurie- That is high for the rental. Is that with a coupon?

Elizabeth- Gosh, that is a lot of running back and forth for your mom...can't they schedule the rads and lymphedema treatment back to back?

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Laura - The only slot they have open for rads is 1:20 PM. I guess she has to go to the lymphedema clinic really early so they can wrap her arm before she starts her day. They did tell her if someone with a better time slot finishes their treatment then she could maybe have the open slot.
Her lymphedema treatment should be finished a couple of weeks before she finishes rads, so it shouldn't be twice a day visits that much longer.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

I was reading a thread about AP rates in June and discovered this (adding my post from the thread for your perusal):


I'm math challenged...
I went ahead and booked the 4 & 3 deal, but I still can't believe my eyes... Can you guys double check my math?

I ran the numbers comparing to the 7 day to the 10 day base non-expiring, non hopping tickets with the 4 & 3 offer. I figured the 10 day ticket saves more. Here's what I got:

For my dates, four adults at Pop the cost is $1964.30.

10 day base non-ex. ticket is $465.41, so the price difference I would pay to upgrade to an AP is $34.08 per ticket or $136.32 for four.

My total for four people, 7 nights at Pop, with the upgrade to APs is $2100.62.

With the 7 day base non-ex. ticket, the 4 & 3 deal at Pop cost $1670.38, plus $139.52 per ticket to upgrade to APs, so the total for 4 would be $2228.46, so I come out ahead buying the 10 day base non-ex. ticket to start.

My cost for four new APs would be $1997.96
7 nights at Pop is costing us $102.66!

 

[luvmarypoppins]

Laura - I am math challenged myself, I have a AP for dh, I thought though if you upgraded your regular ticket to an AP, that they count the 1ST day you use your regular ticket to figure out when the AP will expire so you might want to consider that too, plus with the AP you will get the park hopping and you could buy the TIW/DDE card which we did.

Sounds like you are going to be having a great time. My cousin loves POP and always stays there for like 10 days. He goes during Super Soap Week end time. I wrote on the CB that he just won the Live with Regis and Kelly Travel Trivia on Mon. He got a $6K trip to St. Croix and a $500 BBB gift certificate. Of course I was not watching the show.

 

[luvmarypoppins]

Laura - I am math challenged myself, I have a AP for dh, I thought though if you upgraded your regular ticket to an AP, that they count the 1ST day you use your regular ticket to figure out when the AP will expire so you might want to consider that too, plus with the AP you will get the park hopping and you could buy the TIW/DDE card which we did.

Sounds like you are going to be having a great time. My cousin loves POP and always stays there for like 10 days. He goes during Super Soap Week end time. I wrote on the CB that he just won the Live with Regis and Kelly Travel Trivia on Mon. He got a $6K trip to St. Croix and a $500 BBB gift certificate. Of course I was not watching the show.

I am tired, not breathing well, wishing I could just be "me", normal me, but she hasnt been here since Sept. My dh might be getting a cold, I told him to stay away from me, I am not having a pity party, I just wish I could do some more normal things and not get so tired etc. I just keep fighting at it and pushing myself as much as I can. The crock pot was my friend last night. I just dont have the strength to stand over the stove and cook something. I get tired filling the dishwasher etc. I feel like I am pathetic!
I am also concerned about a dear friends dd. I taught this girl in sunday school. She just turned 18, survived leukemia and a bone marrow transplant at 2 and now they think she has a heart infection, this has been going on since sept. and now she is back in ICU in NYC and back up high on the transplant list, they are taking it day by day. Her name is Alyssa and she is a sweetie. I call her Gods precious princess,

Has Aliceacc posted since she started rads? She lives in the next county from me. I know she didnt say where she teachs but I have a good idea. A good school with a good reputation.

Wishing you all a good day. Its cold an snowing here.

 

[laurabelle]

luvmarypoppins- Congrats to you cousin, that is too cool!

I don't have any tickets currently, but did have an AP and DDE card last year. I am just floored by this deal. Paying $14.66/night at Pop is !!!

I can relate to how you're feeling. Try not to beat yourself up over being fatigued. Your body is working overtime trying to heal, it needs rest and lots of it. You sound like you are doing a good job in spite of it. Yeah, crock pots are great. I also make up extra portions to freeze so on really bad/busy nights I can pull something out of my hat.

Will say a prayer for Alyssa...

Carol- How are you doing? Thinking of you and wondering how your trip is going and how you made out at the hospital in FL.

 

[Pea-n-Me]

Good deal, Laura. Another thought. This is what I'm thinking of doing.

It'll cost me under $500 to upgrade my tickets with the 4/3 deal from 7 day base, to 10 day Non-Expiring Hoppers.

I'm thinking of taking the $200 gift card as well as my $125 Disney Reward dollars and adding the last hundred something myself.

Then we will get potentially three trips out of those tickets, which is what we've done before. We use 4 days, then 4 days, then 2, plus we might have "party" or water park tickets. Doing it this way kind of forces us to take it easy some days which has in a roundabout way been really enjoyable. Renting bikes, exploring the resorts, fishing, walking around, "riding the rails", etc. There are still plenty of things we haven't done yet and many more we'd like to do again.

If I don't change, I'm going to feel like I have to run around the parks every single day to get my money's worth. But I'd really like to just kick back and relax a bit.

I also prefer this to APs as you don't have to make your future trips within the one year, you can spread it out a bit more.

I will have to figure out final resort costs if we do it this way. That's neat. I think they will be fairly low also. We're also doing the QSDP which comes with mugs. I'm studying restaurant menus to see where the best values and most variety can be had. I'm not sure we'll "get our money's worth" on this, especially since we're paying adult prices for our kids who don't eat all that much, but it'll be nice to not have to fret over costs at the register every time we eat.

I've been watching SWA fares just about every day as we've had quite a few issues going on here at home and I wasn't sure if we'd need to change our flights. At any rate, I've noticed there is still quite a bit of fluctuation in fares, they can vary day to day, night to night. They've still not gone as low as the $59 I got back in early Nov, but I have seen them go as low as $78 which isn't too shabby.

 

[luvmarypoppins]

GTAGWTA to all the ladies this afternoon

O.K., stop the cancer coaster, I want to get off, yes, I know you will all remind me I cant do that, but it is wishful thinking.

O.K. we have hit ANOTHER bump in the road. I have cried and prayed again. My ds was trying to cheer me up, saying stuff like, oh forget that 8 hours of surgery, I got my knife over there, I will have you done in 2 and get my zippo so I can cauterize the bleeding. Sounds weird, you would just have to understand middle ds, he didnt win class clown in high school last year but he got voted best sense of humor. Boy I need that too right now.

Well the NP from the surgeon called and she wanted an update on me and we shared info.
1. They did the blood test before for calcitonin which was negative. I told her I thought they did but I did not want to argue with the endo.
2. It does not seem to point that I have medually cancer now. But they are going to look at the 24 hour test.
3. The head pathologist wants more tissue and has suggested to the surgeon to do a core biopsy on me in the office awake!! The np says oh If you tolerated the other stuff, you can do this. I said, I was NOT in so much pain until he did the other biopsys.
4. They still dont know but now they think and are considering that it could possibly be lymphoma. This would be chemo and radiation. I am so not liking the chemo word. To say my body does not react welll to stuff that is of a "foreign" nature is an understatement. I am allergic to many meds, my body doesnt like foreign objects in it like the rods I had, the graft etc. Its weird to describe.
5. The surgery will take place the lst or 2nd week in Feb, since I have to be on the blood pressure med they all agree for a good 2 weeks.
6. The NP called my pcp to give him an update and he refused to talk to her. He said he was busy with patients. I said this does not surprise me knowing him. My blood tests were on his desk for like 5 weeks etc. She said, oh that is highly unusual that a dr. will not talk to me, I said you dont know my dr.

Well next friday my dh is going to California for a week. The 2 ds are going back to college and then they have work too so in between they will help as best they can.

Thanks for letting me vent to all of you. Keep the prayers coming. You are the best sisters!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

luvmarypoppins- What an awful ride! Your son makes me smile too though...he sounds like a good kid. And your PCP sounds like a real piece of work. Maybe your NP or your Endocrinologist can recommend a new one. I'm all about firing dr.s like that, not that I've had to do it a lot, but I don't waste my time with them...my health is too important! I hope they are able to get to the bottom of your diagnosis soon. I bet you're starting to feel like you're on an episode of "House".

Linda- Great deal! I wish we could go when they are offering the gift cards too. We did that with our tickets for years. We just used up our last water park day from some old tickets, this will tell you how old they were... my youngest dd (12) still has one day on her ticket. I had to upgrade her ticket from a child to an adult when she turned 10 and we must have already used one plus option, but they gave her the original amount. I told her to hang on to it, since it's good forever.

I am planning one WDW trip this year, so I was to going to buy tickets only long enough to cover this stay. Originally, I priced out the 4 & 3 deal for a Deluxe, hubby wanted to stay at an Epcot resort. The price wasn't bad, but I could do it cheaper renting points to stay at DVC for 5 nights, and I was going to stay at the Dolphin for a few nights. Now finding what a great discount the 4 & 3 deal is for the no expiration option, I had to book it. If we do this, it will be a 12 night vacation. I, personally, can never stay too long in Disney. If we go for it, I'll upgrade to APs since we'll be there so long. I still may ditch that idea and only buy a 5 day ticket, do the DVC stay, and call it a day. But with the deadline to book the deal looming, I decided to go for it and see how things pan out. I have until May to decide.

We are probably going to work on the kitchen during spring break in April. We'll buy the cabinets before then, but we need to move plumbing pipes and gas pipes and we would rather have the house open. It would be nice to use the grill too. I do want to cruise in the future, either next summer or the year after. The RCL cruises look great, thanks for pointing me in that direction. I got a AAA magazine with an article on their new ship Oasis, that thing is crazy!

 

[luvmarypoppins]

GTAGWTA to all the ladies

Well I am sure we are all dreaming of being on a beach somewhere right now. Its so cold here
Of course all the news is about the plane. Amazing all are safe. I am glad we are now usually flying southwest closer to home. We usually would redeem our AA miles for flights out of Laguardia and I always cringe when we fly over the water too. Now we save our miles for free disney hotel rooms from AA vacations.

Like sands in the hourglass, so go the days of my new, different life. Paging Dr. House, is Dr. House in the House? Laurabelle says I might need him

Well in the cancer coaster of my life today I talked to the surgeon, briefly. I didnt even ask to speak to him. He wants to do the core biopsy before surgery to know what he is dealing with. I booked it for Feb. 8th!!! The lst available opening. I told him about my pain, he said its not good and the breathing and just to go to the ER if it gets worse.

After I hung up in the mail was a letter from the ins. co.,saying the surgery was approved for feb. 12th, so nice no one from the surgeons office bothered to tell me that. Well I thought about it and will call them next week and say no to the biopsy.Its ridiculous since they said it will take 2 days to get back and that is the day of the surgery. They dont care that I have to wait almost another whole month for the surgery so he can wait till the real biopsy to see what it is etc. Why torture me anymore and stress me out,they have done enough of that already.

Oh and he says now they are back on the meduallary thing. I am not even going to get into that with him until I speak to the endo when she gives me the newest test results. He did mnake a comment on something like, oh your body is doing what IT wants to do etc. ??? I told the surgeon to have a nice week end. I dont want to annoy him too much since he is going to be cutting me apart for 6-8 hours and if it goes to the other lymph nodes in the future he will do that too and do alot of follow up. Well if it really is that, then it wont be chemo and only external radiation.

I will try to get in some nice diversional shopping this week end and we will take down the christmas stuff.

Stay warm !!

 

[Pea-n-Me]

lmp You have a lot going on. I think I would want some definite answers before I proceeded with anything, but it's hard for anyone outside the situation to say for sure what they would do not knowing all the details. Are you being seen at a major cancer center? Have you considered going for a second opinion/consult with another team? I know time is of the essence, but you want to make sure you are treating the right problem with the right course of action, you know? One thing is for very sure, I would not be happy with your primary care not taking that call. No, not at all. From my perspective working in health care with various specialists, I would say that was (let see, how can I put this nicely ) very unusual. Hang in there.

 

[Sha]

LuvMaryPoppins I wish I could do more for you than prayers and virtual hugs! I was thinking about you a bit ago, as I had Mary Poppins playing.

 

[jackskellingtonsgirl]

Luvmarypoppins - More good thoughts for you! This must be absolutely maddening to have to sort through all these Dr.s and tests and stop and go. Crazy. Wishing the very best for you!!

All of the ticket prices and options just confuse me. We are going to buy new APs in August and use them for this year and next year. Of course the expiration date will mean we have to travel earlier in the summer next year.

Mom had her 4th dose of radiation today. She was too fatigued to work yesterday. She is also discouraged that they want to leave her port in. I told her I thought that was pretty standard.

She now has 2 sets of neighbors from hell. She wants to move, but her lease is up at the end of March and she will still be in treatment right up until a few weeks before then so she isn't sure she wants to try to take on the task of moving. She also doesn't know where she would move to that would be better than where she is now.

 

[laurabelle]

~~~***GAGWTA sistas***~~~


luvmarypoppins- Glad you're hanging on to your sense of humor! I agree with Linda, you really do need the biopsy to get an accurate diagnosis. I would nicely ask that it be done STAT to have the surgery done in a timely manner. Praying all things fall into place for you.

Elizabeth- I can imagine your mom is overwhelmed, between all the running back and forth and the prospect of possibly having to move on top of it. Sending up prayers for her...
Believe me, all the ticket stuff is confusing to me too! I am in awe of those smarter than me about this stuff who figure it out and are kind enough to share.

Linda- You got a great price on airfare. Right now June/July is high, but the prices for May are starting to go down. Our biggest issue is hubby does not know this far out if he will be busy at work. The kids and I can go down first and have him meet up with us later. I love planning, but this far out it's certainly going to change!

 

[Aliceacc]

Has Aliceacc posted since she started rads? She lives in the next county from me. I know she didnt say where she teachs but I have a good idea. A good school with a good reputation.

Wishing you all a good day. Its cold an snowing here.

Hi!

Thanks for thinking of me.

Yes, I started radiation on January 6th or 7th-- whichever was the Tuesday. So up to now I've had 9 sessions, out of 28.

So far it's going remarkably well. I leave work each day 3 minutes early. Our school has one long driveway as an entrance, and something like 60 busses that use it. So "beating the busses" is the only way I can possibly get to a 3:30 appointment at the hospital. I leave just before our 2:48 dismissal bell, get to the hospital by 3:12, and am out by 3:27 just about every day. The hospital even has its own Oncology/Radiation parking lot, so that huge hassle doesn't enter the picture.

As to the fatigue I was told to expect: I'm not sure how much of what I'm feeling is that, and how much is 3 children/ full time job teaching high school/ January blues kind of stuff. But, in the words of a friend I know who is in AA-- it's "One day at a time." If I'm tired, I put the kids to bed early and go to bed. If not, I'm still in bed by 10 pm... my alarm goes off at 5.

Aside from last night's fight my husband has been remarkably wonderful through all this. (Hey, the fact that we can still have a good fight means I'm not dying, right??? Otherwise we would be much more delicate around me. So I'm calling it a good thing.) Likewise, the people at school have gone out of their way to make it easy.

Luvmarypoppins, I'm sorry to hear that you're having such a hard time. Cut yourself some slack on the areas you can. Dinner can be a can of soup or some Mac and cheese. Ask your husband to hit the local BJs or Costco or whoever and stock up on fast prep foods and paper plates. Consciously think of ways you can streamline the chores.

You WILL get through this. It's hard, especially in January-- there's no holiday excitement, and those single digit temperatures make it brutal. But hang in there.

In other news, my sister told me the other day that she's planning to take her kids back to Disney this year, and I'm SO JEALOUS!!!!! She wanted info on the AAA discount and other ways to save money; last year she just called reservations, told them she wanted a the best resort, and ended up at the Grand Floridian! This year she's planning on the Beach Club. As you may have guessed, we travel in different economic circles!!!! Boy, a week at Disney sounds good right now!!!