Dis Breast Cancer Survivors - GAGWTA!

[Miss Mickey Mania]

Survived my first day back at school. Meetings, meetings, meetings! BORING! DS16's band had its exhibition performance and it was WOW! So much more htan I expected! GAGWTA! Sorry so short. I'm pooped!

Hey MM3, what age group do you teach? I'm a teacher too, here in Scotland. For the past 2 years I taught 6 year olds, this coming year I have been moved up by three years. The new kids will be 9 years old, a great age for forming "attitudes" .

We start back on the 16th with two days in school without the children. They start on the 18th which also happens to be my birthday. What a way to spend it .

I haven't even been able to move into my new classroom as the other teacher hasn't moved her junk out. She doesn't have a class next session due to many issues and she was supposed to have cleared the room before we broke up for summer but she didn't. So now I'm going to have a really hard time when I go in. My classroom assistant has promised to help out as much as she can! All my stuff is sitting in boxes in a store room as I DID empty my old room for a newly qualified teacher starting.

Don't you just 'love' those start of year meetings? Like you haven't anything better to do in your classroom LOL.

Louise

 

[Lessa of Pern]

forgive me while I sit here shedding...

my vent for the day...

I take steroids just befoere each chemo treatment. the first time, I got the steroids from my pharmacy.

cost $$$$.

my prescription plan encourages participants to use their mail order service to save money. I ordered the steroids and I also ordered a medication I take for overactive bladder ( a souvenir of hysterectomy and radiation treatment.)

so I haven't received any of my pills yet. so I go on line to check.

they sent out the bladder medication on friday. they haven't sent out the steroids yet.

my next cycle of chemo is thursday, I have to take the pills wednesday night.

guess when they're planning to ship the pills?


if you said "wednesday" you get a shiny new nickel.

 

[Pea-n-Me]

Good morning everyone!

I like all the visuals about Disney vacations. So nice to share with others who understand!!

We booked an upcoming Disney Magic cruise about a year ago when we were on our last cruise (gotta get that 10% discount and $200 stateroom credit ). We will be going with good friends from our home town. It is their first cruise but she was a former CM at WDW so she loves everything Disney too. They are happy to indulge in letting me make all the arrangements and have even taken to jokingly referring to me lately as their "travel agent". Now that it's getting closer we're beginning to look at details like shore excursions, tuxedos vs suits, flights, resorts pre cruise, etc... I love it!!! Our kids are on the same sports teams so we get to discuss it at least twice a week!

So how about sharing a typical morning with me on my cruise?

I'm too thrilled and excited to sleep. I wake up and peek at the clock - 5am. DH and kids are fast asleep but I'm awake now so why not get a jump on this beautiful day? Slip in the bathroom and throw some shorts and a tee shirt on. Quietly open the heavy stateroom door, step into the hallway and quietly close it behind me. Don't want to wake anyone up now I love this part of my day all to myself!

I'm free!! Everything is quiet - nobody else is in the long hallway with the blue carpet. I have it all to myself! Walk down the hallway (am I floating on air? Man, I love this ship!), turn into the stairway, and run up the stairs two at a time all the way up to Deck 9.

A bit winded (!) but I push open the big wooden and glass doors and I'm out on the "fun" deck. It's dark and serene. Boy, this ship is immaculate! I breathe in the fresh ocean breezes as I walk toward the Aft end of the ship. One or two other early birds are out and about heading towards the drink station like me, gotta get some coffee! Yup, I know it's Nescafe but those first sips of that coffee are like heaven to me!!

Time to start my walk. I go back in the stairwell and walk down to Deck 4. Stop for a few pictures here and there. Don't spill the coffee!! Out on the walkway it's still dark . A jogger runs past me. Wow, wish I could run like that! Not too many others out here but boy, is it beautiful. (Spoke too soon - just got a blast of cigarette smoke from someone in a lounge chair - thanks Pal, I needed that )!

I never noticed clouds like this at home. So fluffy, intense and beautiful. But then again at home I'm not up before sunrise nor out in the middle of the ocean. The moon is huge and full, seems like I could reach out and touch it and I love the way it reflects on the water.

I'm beginning to see a bit of light poking through the clouds. I better hurry with this next lap cause I have to get back here to catch some pictures of the sunrise.

As I walk here I wish I could do this every morning - I'd have no trouble getting my exercise in that way! Oh well, I guess I'll have to settle for once every year or two. I notice some crew activity in the forward area of the ship where the ropes are, we must be getting close to port.

Whatever we do today I know it will be loads of fun and filled with great memories that will sustain me (as they did all during my treatment).

Hurry up, here it comes - I see the sun poking through the clouds!! Oh is it beautiful, almost spiritual for me!

Funny, I'm here by myself but I'm sharing this special moment with the stranger beside me (who happens to be from Boston, LOL). I'll have to bring up the rest of my crew one of these other mornings. I know they love their sleep but they'll love seeing this too at least once. I'll take some pictures even though I know I can only capture a very small part of this awesome experience. But I'll remember it in my heart so that's really all that matters.

Well that was fun, can't wait to do it again tomorrow morning. So glad we have seven nights this time!!

 

[Disney Debbie]

forgive me while I sit here shedding...

my vent for the day...

I take steroids just befoere each chemo treatment. the first time, I got the steroids from my pharmacy.

cost $$$$.

my prescription plan encourages participants to use their mail order service to save money. I ordered the steroids and I also ordered a medication I take for overactive bladder ( a souvenir of hysterectomy and radiation treatment.)

so I haven't received any of my pills yet. so I go on line to check.

they sent out the bladder medication on friday. they haven't sent out the steroids yet.

my next cycle of chemo is thursday, I have to take the pills wednesday night.

guess when they're planning to ship the pills?


if you said "wednesday" you get a shiny new nickel.

That really sucks! Can you call the doc? Maybe they have samples or something? I'd also talk to the pharmacy svc - are they the only ones you can use with your insurance? If so - talk to your insurance people as well if the pharm. svc can't get their act together faster in the future.

And while I know everyone needs different stuff - can your doc prescribe a different steroid? I took decadron before my Taxol treatments and it was really cheap - it never hurts to ask if you haven't tried that before.

 

[NHAnn]

Happy Birthday Kelly!

Linda...thanks...that was an wonderful sunrise walk! I have never cruised, always afraid of being seasick cause I have had innrer ear and mild motion sickness issues in the past....but I'm thinking it's now going to be another thing on my "list" of things not to put off any longer I find the ocean sooooo awe-inspriring and peaceful.........

Lessa, that is so frustrating My prescription plan has the mail order component, but we also have a decent co-pay on up to a 30 day supply at the pharmacy as well, for situations where we can't wait for mail order. I hope you can get what you need for when you need it.

Laurabelle...I pick up my pills from the onc. They get them from a central distribution for the whole trial, where participants are randomized for one or the other. My understanding is they will be in two containers. One for Tamoxifen, one for Arimidex. I take one of each, once a day. One will be the real thing, one will be a placebo, we just don't know which one. Even my onc. I guess so that THEY are not biased in reporting on my reports of side effects. I asked the nurse trial coordinator at my onc..."Do you suppose they could screw up and give a participant 2 placebos, or 2 that are real?" She looked shocked and said that anything is possible but they are so very very strict and careful with this stuff, she doubted I needed to worry about that...

One thing I want to ask those of you who have taken one or the other or anything similar...did you take it in the morning or evening and did it make any difference to you in tolerating it?

Another interesting part of the trial is that the drug is supplied by the trial, it does not go through my insurance at all!

 

[Lessa of Pern]

I'm back from the pharmacy. got the ten pills I need for this go-round.

I ordered a thre month supply via mail. so I'll have the pills for the next 3 cycles. then I just have to get one more refill in the pharmacy for the last cycle.

 

[Disney Debbie]

:
One thing I want to ask those of you who have taken one or the other or anything similar...did you take it in the morning or evening and did it make any difference to you in tolerating it?

I take my arimidex every morning with my calcium and blood pressure pill. I haven't been bothered by them at all. Be sure and take some calcium if you don't already(or talk to your doc about taking it! don't want to be giving out unsolicited medical advice!) But my doc told me I'm more at risk for osteoporosis(sp?) and I'm not sure if it's because of the arimidex or the fact that I'm in menopause for it.

Lessa - glad you got what you need for this week.

 

[NHAnn]

Thanks Debbie Yep, they did stress the important of calcium - I am taking a multivitamin that has calcium in the morning, and a calcium/ magnesium tablet at night, getting a fair amount in my diet as well, and have those Viactiv chewy things too, will pop one at lunchtime on days that I haven't had any dairy source of fortified juice. I was taking the mulitvitamin and the cal/mag anyway since my hysterectomy 4 years ago. My guess is the calcium is important no matter what the reason(s) is/are for the lower estrogen levels, since that's what contributes to osteoporosis.

Phew, Lessa, that's good news

 

[Tinkertude]

chemo also leaches calcuim from your bones. Had two friends in early thirties that were tested after their stem cell procedures and they already had osteoporosis. I have it in my wrists, osteopenia (sp) in my hips and none in my spine when I was tested.

 

[laurabelle]

Lessa- I'm glad you got the pills to hold you over. I was going to suggest that. Shedding sucks! I got sick of it and shaved it myself...tired of seeing it everywhere. Here's an old post from here that I shared from my blog...HTH.

The Pros and Cons of Baldness and Wigs
This is by no means a conclusive list. Thankfully enough time has passed since my hairless days that I'm sure I'm forgetting something, and hey, chemo brain comes in handy sometimes!

Wigs
Pros: Keeps your head warm in winter; easy to care for- wash it, shake it, let it air dry, brush it and go; you can actually see the back to style it; it is thicker than the average head of hair; you can have a completely different look just by changing wigs.

Cons: it is itchy, uncomfortable; hot and sweaty in the summer; it’s not “attached” to your head, so you may want to use double-sided tape to help secure it to your melon… unless you’re allergic to adhesive like me and end up with sores on your head; you constantly run the risk of your hair going askew…you move right, your hair moves left; wigs can cost a lot of $$$$; it usually looks like what it is - a wig.


Baldness:
Cons: Isn’t it obvious?!? Well, if I had to list them, I’d say the naked-alien-vunerable-you-look-like-a-cancer-patient feelings that baldness evokes are enough, thank you very much!

Pros: If you didn’t think there were any, hold on… how's about record breaking shower time - nothing to shampoo, condition or shave; record breaking time it takes to get ready - nothing to tweeze, tease, comb, brush, blow dry, or curl; it does take a little more creativity in the make up dept., but you can artfully manufactor a mood by simply changing the way you draw in your eyebrows; no $ spent on hair cuts, color, ect., though you may need scalp treatments; an easy way to cool off in the summer, during a hot flash, or an argument (whichever occurs first) is to flip your lid; it's a cheap source of amusement in a time you really need some amusing - try letting the kids draw on it or drill your head with a toy drill, tip your wig to other drivers when they let you pass, the fun is only limited by your imagination...; ahem, hubbys really seem to dig it! ;o)

And finally, for the #1. Pro of baldness:
Watching it grow back in again!!!

 

[laurabelle]

Ann- Tamoxifen can bother your tummy a little. I ended up taking it at night, but that may not be the best time because I had an awful time sleeping too and slept better once I finished Tam. (duh!) Of course now I'm full blown perimenopause (was in chemopause for the first 3 yrs) and going through that has messed up my sleep again. Apparently, if you come out of chemopause, you go through "natural" menopause a good 10 years earlier than normal. Nice huh.
I would agree about them being careful with your meds, they should be triple checking it (make sure they do!).

Has enyone ever been told not to take calcium at the same time as other meds? My mom was told this years ago...

Linda- Thanks for the trip! Like Ann, I probably won't be cruisin' as I have problems with motion sickness (they think that's one of the reasons why chemo kicked my butt!) That last pic was incredible!

I'm so going to be using my visuals this morning...I'm off to get my scope. I had a dream this morning that I was late for it!

GAGWTA!

 

[snappy]

Good luck with your scope, Laurabelle!! Don't you just love dreaming about medical procedures? ARRGGHH!!

As far as taking calcium with our meds, I know there is a problem taking it with my thyroid med, synthroid. I was told to wait 8 hours after taking synthroid before taking my calcium. That is the optimum spacing.

I take my taxoxifen at night right before bed, both pills, just got into that habit to avoid any interference with synthroid (the nurse said no meds for 8 hours after synthroid, the doc said tam was ok). I never thought that tamoxifen could be affecting my sleep pattern. Maybe I'll move it up to the afternoon.

Glad to hear you got the med issue worked out Lessa. I hated the mail order thing, once I did not received my tamoxifen until I was almost out, so I reordered. Naturally, the lost pills came in the next day after I ordered the new bottle, almost a full month late. Our revised benefits don't included mail order this year, the tamox is $43/month instead of $30 for 3 months. So I guess I miss the mail order for the financial side of it.

Ann, hope you don't have any trouble getting used to the meds. That is great that the study will cover the cost, I heard that Arimidex costs a lot more than Tamoxifen, not sure if that is true, but it makes sense since Tamoxifen has been around for so long.

Pea-n-Me, loved those pics. The last one of the beach, where was that taken? I can so see me there. The narrative was great too. You have a gift for writing, girl.

 

[Lessa of Pern]

I just "love" getting lab work done.

had to ghet bloodwork done this morning.

it's one of those places where you don't need an appointment, you walk in with your prescription and take a number. I got there when they opened at 7 this morning, I was number 6.

got to work by 9:30, so it wasn't too bad.

 

[Pea-n-Me]

Pea-n-Me, loved those pics. The last one of the beach, where was that taken? I can so see me there.

That would be none other than Castaway Cay, Disney's private island in the Bahamas. The funny thing about that particular picture is that I took it the morning our ship evacuated the CMs that live on the island several days before Hurricane Frances hit last September. Normally there are lots of boats and things out on the beach but they'd put everything away for the storm. We were there the day before and everything was out. I'll try to find a better picture for you later, Snappy.

P.S. For those of you who are afraid to cruise due to inner ear/motion sickness problems - you're talking to the Vertigo Queen here, LOL, (plagued for many years with inner ear problems and dizziness) and I've never had any motion sickness problems on either of our cruises. Food for thought.

GAGWTA!!

 

[laurabelle]

and I'm not a happy camper. I've gone from mild colitis to moderate/severe. It looks bad. I have to take Prednisone along with Actunal (sp) to fight bone loss from the steriods. Have I mentioned lately that I HATE STERIODS!!! They made me crazy on chemo....

After that, it's up in the air. If (or more accurately, when, because I have not stayed in remission more than a couple of months) it flares up again, he wants to talk to my onc about possibly putting me on a immune suppressive drug.

Lessa- the waiting sucks! My appt was for 9:30 and I didn't get seen until 11:00...finally got to eat at 1:00.

One bright note...I met a survivor! A nurse there, who sees my onc too. She said her prognosis was not good, 1-3 yrs, but she's a 5 year survivor!!! And a positive, bundle of energy to boot! I'm really glad I got to meet her...

GAGWTA!

 

[Lessa of Pern]

I'm sorry you're going through all that, laurabelle, but I'm glad you met a survivor.

 

[MerryPoppins]

GAGWTA!

I'm back in town. I've not had a chance to read all the posts from the weekend, but I wanted to say hi.

 

[snappy]

Sorry you are burdened with colitis as well as BC, Laurabelle. My Sis in law has Crohn's disease, and it is truly a burden. Sending a hug to you. Taking the steriod is a drag, too.

Glad you met another survivor. Funny how you run into them when you least expect it, isn't it? Glad you found the one bright spot to the day.
Hang in there, but feel free to vent, that is one of the reasons for this thread.
We all take our turn at it, don't we?

I'm going for an ultrasound on my theroid tomorrow. This is the first one since my surgery. The technician is typically a man. I don't know if anyone else feels like this, but when I have to remove everything at the top, I just feel very self conscious. Not with the docs treating me for the cancer, or even my endocrinologist, I've seen him for years. Maybe I'll get a female technician this time.

I have wanting to ask another question of you ladies with unreconstructed mastectomies. What do y'all do about swimming? I ordered a specially made swim suit from Lands End with the pockets, it just doesn't feel or sit right.
It feels more like armor than a bathing suit. I also had pockets for my prothesis sewn into a couple of suits I bought last year. Those are better, more like normal, I was able to try them on before buying them so they just fit better. I still fee self conscious wearing any of them. A good part of this is that I need to drop some weight, but I have a feeling that even if I could lose 25 pounds I would still have this problem. (Hey I can dream can't I?) At almost 52 years old, I should be more comfortable with my body, and I am generally, it is something about swim suits I guess. It is just so hard to camoflouge the missing part, when the real thing on the other side is big sized. Maybe I'll go for that breast reduction after all.

I tried a few on at the woman's store here that handles stuff of BC survivors,
they were actually worse than the Lands End one.

 

[Pea-n-Me]

laura, just wanted to send you a and say sorry you didn't get the results you would have liked. It's lousy to keep having these hurdles - but you're a fighter and a survivor so hang in there, sista.

 

[Disney Debbie]

Laura - so sorry! What a lousy day.

Snappy - I have a Land's End suit and I like mine just fine. I too need to drop AT LEAST 25 lbs! LOL But it feels perfectly comfortable to me. Have you gotten one this year? Maybe a different style then mine? I got one of the black faille tanktini tops. I go to water aerobics 3 times a week so mine certainly gets plenty of use!