Anyone starting Chemo in August 07?

nash

Should also add that my mammo was read as OK. Which is neither here nor there, as my mammos have always been read as OK, yet here I am.

wackyjackie

Nash,

I'm sorry to hear about the TM.  I hope it's nothing.  It never seems to end.  I must tell you how much I admire you.  I'm so happy to hear you are going to be competing! Good luck on Saturday.  That is fantastic.

I went to ob/gyn today and got copy of MRI report.  Told them to let him know I was very disappointed that he did not call me.  They have a big fundraiser going on for the American Cancer Society Making Strides for Breast Cancer.  There are signs all over the office.  I got a little (okay, maybe a lot) testy!!! I told them that no amount of money they could raise for "the cure" would matter if they can't show compassion to women with breast cancer.  I told them to tell doctor (who I really like) that I won't be using him any longer.  My face was red and very hot when I left there.  I'm not one to like confrontation but it felt good to get it out.  I think I scared the crap out of the pregnant ladies in the office and their husbands!!!! LOL.  Oh well.

Anyway, have appointment with gyno/onc on October 7th.  I had MRI because I had a vaginal ultrasound (which I requested because of tamoxifen) and U/S showed a complex cyst.  MRI results show fibroid tumor.  I've had fibroid tumors for years.  What I need to know is, why wasn't it there last year???? I don't have a period anymore and doc said I shouldn't be growing things.  But he never called me to answer these questions. 

Thanks for listening.  I will say no more until October 7th. 

Have a great day.

Hugs, Jackie

yellowtownhouse

Jackie, hurray for you for standing up for yourself!  I'm so sorry you've had such a run around and such lack of compassion.  All during my treatment I always had to caution my husband that 'I will handle this honey', because he has a voice that would carry through all the floors of the Trump Tower and he was very angry about 115% of the time.  Besides I figured I said plenty and was afraid to turn him loose.  At certain periods during your treatment it just isn't possible to switch canoes.....know what I mean?  However, as soon as the rads were finished and I saw her one last time I got the H*** out of Dodge!  Just a suggestion for you.....I wrote a letter to the "evil one" and cc it to the executive officer of that practice and also to the GA AMA.  Of course, I never heard a single word but I bet I've told over 200 people since then about her and her practice.  These have all been people dx with CA or loved ones of.  Sometimes the grassroots thing is the best ammunition we have.  I've always been very careful to not be slanderous but spoke of actual facts that I can back up.  Sorry, didn't mean to run on so long. 

Nash, sorry also to hear of your mixed results.  Do we ever get to feel we're home free?  Guess not, huh?  You just amaze me that you're going to do the exhibition skate but how wonderful that you can and will and will be wonderful!!!!  Your family must be so proud  of you.........I am. 

Hugs to all........

June

nash

Oh, Jackie, I'm so sorry you had to pitch a fit with the doc's office--I don't understand what their problem is. Thank goodness you've got the appointment with the gyn onc--hopefully that will get all of this sorted around.

Thanks for the support on the skating. I'm pretty excited--hope my performance will go OK--it's hard to be consistent under pressure, especially when one doesn't perform a lot. But considering a few months ago I couldn't even get through an entire program and now I'm going to perform one in front of people, I'm pretty darn pleased.

My bone scan is Oct. 16th. I'm sure it's going to be fine--I just had one at the end of last year. But one would like to just forget about the whole mess and go one with one's life, and I guess we don't get to do that. Bah. Oh well, it could be a lot worse.

Hugs to all.

wackyjackie

That's the key phrase that keeps us going...."it could be a lot worse".  I guess this is the "new" life that we have now.  All I can say is, thank God we have each other.  I seriously don't know how I would survive without all of you!!!! Love you all.

Hugs, Jackie

katoMato

Hey Nash, When in January is your competition?

Hi Suze...How are you doing? Do you still have the same doctors you had before? Do you trust their expertise?

Jackie...YOU GET 'EM. Small things (like you) can be scary when provoked. Good for you. You mentioned that you won't be using that doctor - have you found a new one yet?

Don't know how I would survive without all you girls either....truly.

Dinner calls... I must respond. It's programmed into my DNA.

DGHoff

Hi Everybody! Sorry to have been incommunicado for awhile! I was out for a few days on a backpacking trip on Washington and have been playing catch up around here ever since!  (check out my trip pics on Facebook) By the way, I did 27 miles in 3 days! A personal milestone! I won't deny that it was quite challenging, but every time I felt like I wanted to complain about how hard it was, I reminded myself that, two years ago, I was drooling on the couch in a chemo haze and had to muster up the energy just to take the dog around the block! That made it all suddenly go away, and I could stop and just appreciate how beautiful the mountains and trees were, and how fortunate we all are to be here, and how lucky I was to be able to do it at all.

Good for you, Jackie, in standing up for yourself. Our doctors often forget that we are all people. Not just patients on a chart. Maybe your comments will make them think a little more carefully and will make it easier for the next person waiting for test results. 

Lilith, I love the new avatar. You look terrific!! 

Suz, I'm so sorry to hear about your new primary. Ugh! Please do stay with us and let us know how you are doing.I noticed you are from Vancouver, BC. What a great city! British Columbia is one of my favorite places in the world. We kayaked the Queen Charlotte Islands there one year and I've explored Vancouver Island a fair bit too. Looks like you maybe do some boating too from your avatar. Anyway, a big 'ol hug to you and know that we are here to help if we can. 

Nash, Good luck with the skating!! I am impressed that you can skate on a competitive level! I can mostly only hope to get across the rink without falling on my kiester, so I am always in awe of people who can actually DO things on skates. 

June, so glad your results were all negative, but hope that nothing comes of the "weird" levels. I wonder sometimes too how much if some of my aches and pains of life were just magnified and sped up due to chemo. 

Hey Nash and Kaye! Only 9 days til we see each other! Do we need to make reservations at Stone Brewery do you think? 

Gotta go catch up with Top Chef. I'm a day behind! 

XOXO to all!

DeAnn

katoMato

Welcome Home, D!! What an amazing trip...and what a "stud-ette" you are!

re the reservations...I don't know any thing about the place, other than seeing a guy in the restaurant of the hotel we were in last Tuesday (for our 30th Anniversary!) in a Stone Brewery Tshirt! (I would have called you, Nash, but we were only there 3 days and we kept...um...busy. 30th and all...)

760-471-4999 www.Stonebrew.com

I just called to see if they take reservations for that night and she said yes. She told me to call as soon as we know how many is in the party and that they have some large groups already at 6:30, so 5:45 or 6:45 might be better than 6:30.  (I don't understand the difference 15 minutes makes...but maybe that's just me. (I'm HVNCT. "Historically Verifiable No Concept of Time")

I'm off to look at D's pix on FB!

nash

I can make the dinner reservations so you don't have to call long-distance, Kaye. We'll have a party of 9, right? Four Nashlettes, 2 katomatos and 3 DeAnns? The time doesn't matter to me, so you guys tell me what works for you. I'm thinking a little later is better, due to airplanes and things, so how about 6:45PM? Just let me know and I'll call.

DeAnn, can't wait to see your FB pics--that's amazing you hiked that far. I would have collapsed.

Kaye, my competition is Jan 31. If I don't chicken out, that is. I was so nervous at practice yesterday I started wondering if this was all such a good idea, having not done anything like it in 25 years. Ack. But I think I'll be OK tomorrow. I'm also having a judge come and critique the program on Tuesday, b/c I'm planning on skating my test in Oct., so at least I'll have several goes at it before January. When I get nervous on the ice, I get this weird disconnect between my mind and my body, where I have no idea where any body parts are or how to move them. It makes skating a bit tricky. But I'm hoping to pull my act together when I need to!!!! (Can you tell I'm slightly hyperventilating?)

katoMato

The number for the reservation are right (2 Katomatos anyway). I spoke to my Son In Law (Mr. Brewmeisterski-of-Portland) and at my request, he suggested I try the "Oaked Arrogant Bastard". It's the name of one of their beers. Really. He'd heard of Stone Brewery, and said they were amazing. "Ground breakers of the IPA down there." is actually what he said. Not real sure of what any of that means, but I'm looking forward to it!

DeAnn what amazing pics...and the photography itself was notable. Impressive. I especially liked Cayenne....anyone who goes hiking on a long hike with a labrador is OK in my book.

Nash - hang steady! You'll be great. Your brain will kick your body into obedience, and it will just take over. I wish you the best. Actually, I would like to see it.  (The whole "weird disconnect" part would be fun to watch, too, but not so much fun to do i'm sure. )

nash

Kaye, totally forgot to say Happy Anniversary, and um yeah, I understand why you didn't want to hang out with me last week.

Yeah, Stone is some sort of beer brewing mecca. I'm more of a wine girl myself, but can be flexible when the situation calls for it.

And hope you're right about my brain kicking into gear. It's going to be really frickin' embarrasing if it doesn't. DH is going to video the program--if it's not too horrible and I can figure out how to upload things to YouTube, I'll put it up so you guys can see it. And thanks, DeAnn--actually, skating at a competitive adult level isn't that, well, competitive. Skating is definately a sport that favors the young. But if you factor in my age, health status and limited practice time, those things kind of make up for my little teeny weeny jumps.

nash

DeAnn, I just checked out the pics of your hike--amazing! What stunning scenery, and your hair looks fab!

Kaye--loved the pics of the hotel you guys stayed at last week. Which hotel was it? 

DGHoff

Thanks for the compliments on the pics.  Digital cameras are a godsend so you can tell right away if your picture is worth a hoot. And I've learned to be a little ruthless when trashing photos that are not good!

Yep, 9 sounds right and I think 6:45 is probably a good idea, Nash! That would be great if you could make those reservations! Thanks!

And Happy Anniversary, Kaye!

DeAnn

nash

Will do!

lilith

Happy anniversary! well, I've seen your picks on FB, so I already know it was  a happy one indeed - and that is good to know. happy for you to be happy. 

nash

I made dinner reservations for 6pm (the only time they had available). Will send you FB messages with details.

nash

BTW, I had a total blast with my skating exhibition today. Didn't hit my spins the way I wanted to, but my jumps were good, and I met my goal of skating in a calm manner. No mental disconnect like I had at practice on Thursday. So I was pretty pumped. Am trying to load it to YouTube right now so you guys can see it. Video is sort of long b/c DH also filmed the 3 year old who skated after me--one really old, really tall person followed by one really young, really short person.

nash

Well, I am annoyed to announce that the gyn called with the results of the pelvic u/s from last week, and my endometrium is getting thickened from the Tamoxifen (even though I take a fraction of the 20 mg dose--shhh, don't tell my onc that I've been chopping up the pill and taking 5mg every OTHER day). So, my choices were endo biopsy or D&C---chose the biopsy, b/c that sounded like the more entertaining of the two.

AAAARRRRRRRRGHHHHHHHHHHHHH. OK, I feel better now.

nash

Wanted to add that my onc, as much as I like her, poo-pooed the need for annual pelvic u/s while on Tamoxifen. Guess we showed her, huh?

nash

Wanted to add that my onc, as much as I like her, poo-pooed the need for annual pelvic u/s while on Tamoxifen. Guess we showed her, huh?

katoMato

AAAARRRRRRRRGHHHHHHHHHHHHH.

(That is known as Shreeking In Harmony.)  What a drag, Nash. Really.  Entertainment value aside, what went into the decision to chose the biopsy over the D & C? Is it less invasive? Is there less chance of an error in a biopsy? Is there a particular mass that they're biopsying? Are you sedated with the D & C and you wanted to avoid that? (Why am I asking all these questions? I don't know.) Neither one sounds fun, sorry.

And the thing about the new onc not thinking an annual pelvic u/s is necessary just proves the point that you've got to be aware of your own body...and your own advocate. Are you the one who pushed for it? You, Madam, will be her "educator" - and she's fortunate to have you. Her experience with you will make her a better doctor.

Let it be said that I've already been praying for the results of that - that everything would be fine. Period.

Have you scheduled anything yet?

nash

Hey, Kaye. The biopsy will be Oct. 20. I asked the gyn what the most conservative procedure would be, and he said biopsy. I believe they'll just biospy a random thick spot, but I'm not sure.

The gyn was actually the one who said he routinely does pelvic u/s on his Tamoxifen users, although I would have pushed for it if he didn't.

The odds of endo cancer are low (although my odds of pleomorphic ILC at age 38 were miniscule, so what does it matter), but now I'm worried about mets to the uterus. Lobular likes to go weird place, such as the uterus and other girlie parts. However, I do know that endo thickening while on Tamox is not uncommon, and can be benign, so we'll hold onto that.

I moved my bone scan up to Oct. 7th from Oct 16th, b/c I was going to skate my test program for judges on Oct. 16th, but I had a judge come an critique the program at the rink today, and there are too many things to work on before the 16th, so I'm going to test in November instead. Oh well, at least I'll get the bone scan over with sooner.

DGHoff

URRRRGH! That all sounds just plain lousy, Nash!  We will hope it is just a tamox side effect and nothing more. 

Oh, and I'm glad to know I'm not the only one who sort of created my own dosage amt of tamoxifen on the sly. I figure, I'm half the size of a lot of people, so why should I have the same dose as someone who weighs twice as much as me?  

nash

LOL, DeAnn, I didn't know you were a Tamoxifen Rebel also. Whoo hoo! 

I think it's so ridiculous that they prescribe 20mg to everyone regardless of weight and hormone receptor %. My tumor was only moderately positive, I don't weigh as much as most people either, and I am sensitive to meds in general (I have to get a half-dose of drops at the optomitrist or else my eyes are dialated for 8 hours), etc. I know the Tamoxifen is having an effect even with my 2.5mg average a day b/c the breast surgeon said she could feel my breasts were a lot less dense.

I'd done research on the Tamox dosages as well, and there are plenty of studies that concluded 1mg was an effective dose. So there you have it.  We rock.

wackyjackie

WOW!!! You two do rock!!!! I never ever even thought of taking a lesser dose.  I am such a prude, a rule follower.  You girls are the best!!!!!! Of course, chicken that I am, I will stick with what I've been taking.  Nash...YAY for you insisting on the pelvic u/s.  Same with me.  I insisted on having it, and thank goodness.  October 7th! I will be praying overtime because that's the same day I go to meet my new "gynecological oncologist.   Does the fun and excitement never end?  I have a strong feeling we will be fine.  Just these bumps in the road to keep us awake!!

Hugs to all,

Jackie

nash

I think we'll be fine, too, Jackie. I was reading up on endo thicknesses, and mine seems like it's still w/in normal range, so I don't even know why I'm having the biopsy. I requested that the gyn office send me the radiologist's report, b/c I'm really curious what it says. Anyhow, I think if there was anything on your ovary, it would have showed up on MRI.

I also got a copy of the xray the internist did on my back where I have pain (for which I'm having a bone scan next week), and it shows bone spurs on the vertebrae, which seems weird to me, but whatever. 

As far as the Tamox dosing goes, I did start out my HT journey taking my 20mg a day like a good little girl. It's just that I felt funky on that dose, and started playing around with it until I got it to a tolerable state for me. If you're feeling good, there's no reason not to take the 20 mg as prescribed. For me, it was either adjust the dose or not take the meds. Ironically, I felt worse completely off of it (I took a month break to see how I'd feel). My period immediately stopped, my hot flashes came back, I felt worse. Go figure.  But now I'm quite content on my 2.5mg average, and I know it's working b/c my surgeon said she could feel a difference in my breast tissue.

katoMato

2 days to go!!!

nash

Whoo hoo!

wackyjackie

Ladies,

YIKES!!!!!! my daughter just went for annual ob/gyn and has  a cyst on her breast.  needs to get ultrasound on left breast on Monday.  she is 22 and freaking out.  i feel so bad for her!!!!! this is crazy!!!!!

Hugs, Jackie

CALIFORNIA girls have a great time!!!!

nash

Oh my gosh, Jackie. That is crazy. Lots of prayers coming your family's way. Let us know as soon as you hear something.