Starting Chemo in JAN 2007

As I thought, Skye, you were posting while I was fretting.   I hate your insurance company, but at least you'll have the biopsy results soon (if the office remembers to schedule it).  Maybe it didn't show up on the bone scan because it is not *in* the bone, but just a cyst or something around the spine.  I'm glad he thinks it could possibly be benign, that's very good news.  So I guess we just wait, but please don't assume they'll get the bx set up - keep on top of it.  We know from past history what happens, and you don't need to spend any more time than necessary in this state of not knowing. 

The MOG dress is beautiful, and you look beautiful in it.  And thin - how could you possibly think it adds 40 lb.?  It's really lovely.   And my dvr is also set for Wednesday, although I'll be watching it as it happens.

And Skye that MOG dress is lovely.  What 40 lbs. are you talking about?  Do you want a closed pump or sandals for the outfit?  Either would be lovely.  You look GREAT!!!

Hello all,

Skye, that dress is beautiful.  Can you also please tell me what time that show is on on Wednesday nite.

I lost a good friend this weekend from this site.  CTG (Laura) passed away on Saturday.  We were suppose to meet in Rome, Italy, but my plane was 5 hours late leaving Canada and we missed each other.  We had both talked about our trips, and some of the pics she sent me of her, I was in the same spot taking a pic on my trip.  It makes this damn disease so much more real.  I think most of the time I live in the land of denial. 

Well I finally will get the official results of my bones scan (Dec 6) and my MRI (Dec 21).  I'm sorry, but I think this is just too long to wait, and it has really played with my head.  Especially after my onc's nurse said to me there was progression, and that I had to see him.  I'd like to punch her....maybe I will tomorrow...LOL. 

It's definitely an Atiman nite tonite.  Thanks for all your encouragement everyone.

I'll let you guys know tomorrow nite what they're going to do with me.

Loving hugs to all...Joni

Hi Ladies,

Joni, I'm so sorry about your friend Laura, I guess the stats will have their way at times but that doesn't make it easier to bear. I don't think denial is a bad state to live in, though, as long as it doesn't affect treatment. We are all holding our breath to hear about your appointment today. Hope you can feel us holding your hand there in the doc office today.



Jan, I forgot to express my sympathy for your aunt, too. I know you are probably in surgery as I write this but I know you'll catch up later and that you will come out of this in perfection.



Thanks for the votes of confidence in the dress. I'm trying not to overstep my MOG bounds so have not shown it to future DIL yet as I don't know if her mom has even shopped yet. Caya, I think I'll want to wear sandals as Sept. 6 is usually still pretty warm around here. For the pic I just put on some silver-gray fabric ones I already had.



Also thanks for the support on this back thing, as always. Caya, what you said.. "I believe PetScans can show alot of false positives - correct me if I'm wrong Mel - and here they will test that damn cyst/tumour and you'll know and be able to deal with it immediately like your onc. said."...makes a lot of sense, I hadn't really thought of it that way. I guess it's because it's in the bone/marrow that makes it a little tricky to test. But if you can bear with me obsessing a bit more, it is also in the same place that for years has hurt me whenever I had a fibromyalgia attack; it would always start with a pulling sort of pain right there in the upper center of my back. But it never tingled. However, it has me wondering whether perhaps it's a cyst that was always there. At least it's a hope. The onc said it couldn't b an arachnoid or osteoarthritis cyst however because it's in the marrow. Well enough of that.



We got a big snow dump overnight and I'm just home with a lot of work to do but glad to be here.

Terrific Tuesday everyone! - Skye

I have just received word from Jan's DH!  Text of the email follows

Joanie, so sorry to hear about your friend, everytime it takes my breath away. Damn cancer!

Jan, So glad it went well, sigh of relief

I have a hair appointment tomorrow, I am scared but tired of looking like Kramer. My hair looks so dry too, even though I have conditioned it ever since it was whiskers. Well , I was bald...nothing is worse than that right?

Skye, I love that dress.  I think it suits you perfectly but I agree I wouldn't let on I had it until mother of the bride gets hers.  We have to be so quiet!  Still keeping positive thoughts on your cyst, that is what I'm call it.

Jan, although you're still in recovery, I'm glad to hear things went well.  So sorry about your aunt.

Joni, thinking of you all day.  We are there for you.

Caya, glad you are having a good time in Montreal.  It is freezing here too and we had snow this morning during rush hour which was a mess. 

I found out this weekend my Ds#2 has a girlfriend.  Yeah, finally..he is such a cutey and so sweet.  I'm trying not to get over-excited about it but it's hard being the mother of two sons!  At least I have you sisters!  Hugs.

What a great day for good news!  Joni, since you already knew you had progression, that really is the best possible news.  I knew how much you were dreading having to do chemo again, so this is great.  Hopefully the radiation to your hip will help with your pain, and things with your liver will prove to be stable on the Arimidex.  For now, I'm just so relieved for you!  I hope you told him how hard it was for you to wait all these weeks for your results.

Rebecca, thanks so much for the report on Jan.  I thought of her all day long, and although I fully expected her to do well, it's a relief to hear it for sure.  Jan I'm sure you'll recover quickly, and I can't wait to hear what you think of the process. 

I saw my oncologist today also - CT scan was unchanged in the area of the lung spots, and the only thing that showed up was some post-radiation changes on my left side.  She tinkered with my pain meds a little bit, hoping to get me more comfortable, and I will see her again in three months, but no CT scan for six months.  So I'm good. 

Guess I'll go see if anyone's in chat.  Hugs all around.

Hi guys,

Sorry I could not chat tonight; I messed up my laptop Internet in the process of finally trying to get my Ipod usable on it and my big Mac's browser can't handle the chat room.

But I was so glad to plug in here and see that Jan came through beautifully. Jan, I know you will be recovered in no time. Thanks Rebecca for being postlady, and please do pm or email me the info (I'll see the email sooner probably).

Joni, I was also waiting for your news, and all things considered, I think it was a decent outcome. I'd take rads over chemo any day. It sounds like the "progression" is not progressing any more? You sound like you are handling the whole thing very well after waiting all that time. It also sounds like you are nipping some fairly small things in the bud.

As for me, Rebecca I wouldlike to think it's a cyst that has always been there, and you are right that my doc tends to think cancer first. I guess I'm glad that he is vigilant however. And yes, it was heading for a biopsy either way so I'm not terribly upset over the lack of the PET scan.

Mary we do have to be careful as MOG's, don't we? The funny thing in my case is that the MOB is more worried about choosing a bridal gown for herself than a MOB dress because she is getting married this summer! How sweet that your DS2 has a girlfriend. I hope it's a nice relationship that works out. Mine has parted from his "friend," Farmer Heidi. I guess without the cows and sheep around them their love could not survive. He has another date lined up but has no money to take her out, he is waiting for a missing art payment and driving me crazy as he also waits for his substitute teaching paperwork to go thru.

Anyway, hope I can get the laptop working again by Thursday. In the meantime at least I can use the forum, pms and email. - Skye

I am back from a wonderful timeout at the beach ... loved our break from reality. And Joni, GOOD for you. I think all any of us can do is keep the bad guys from breaking down the door, and you are doing that. You too, Skye, but the hissing you hear is the steam coming out of my ears. I am so exasperated with your insurance. And Jan, you are doing well, as we knew you would.

Hugs to all,

Melia

Hooray for Jan!  So glad that's over.  She'll have a couple of tough weeks, but after that she should be home free.

Skye, just ridiculous that they'd deny the PET scan and subject you to more invasive baloney that will cost them more.  The system!  ^%$#!  On a better note, LOVE the dress.  Navy is your color!  Looks awesome with your hair, which, btw, looks awesome too!  Also, love the shoes w/that dress.  Perfect choice...makes your legs look long and kind of monochromatic.

Joni and Mel, glad to hear you got OK reports from your doctors.  I just read your posts...had missed a page.  What else is new...  Rebecca, 9/9?  E gads.

Viddie, you should change doctors if you are not 100% confident with the  one you have. I am so angry that these doctors don't call us back immediately with test results. In addition to being insensitive, it is just plain rude. I have no patience with people who think they are busier than the rest of us. I will hold my schedule up against theirs anyday. And don't tell me that they are busier than a young mom, for example!  Grrrr.

I am sorry about the muga, and hope you get it resolved quickly. Hopefully you can continue on the herceptin; Tina's was so low that of course she needed to stop.

It's tough being back at work, I really loved having a four day weekend. And Valentine's Day is looming, the toughest time of year for the floral industry. Poor quality, high prices, lots of emotion. Mid winter is a dumb time for a floral holiday!

It's funny; I have a pain in my belly that disappeared completely while we were vacationing. Now it's back. I am wondering if it's an ulcer .... and of course in the middle of the night, I assume it's cancer. But it does go away when I am relaxed.

I did feel this weekend that my energy is back where it used to be. I found kayaking and bike riding to be so much easier than last summer. I even did a fairly vigorous hike that I could not have done a few months ago. I am stiff but that goes away once I get moving. Takes me several steps and I have to remind myself to "stand up straight".

Ok all, stay warm and safe.

Melia

Oh Joni, I am so glad the news was good.  I think it's important that the blood work and liver function are good.  You can handle anything I just know it.

Viddie, so sorry about your MUGA, hope you get some more info soon.  You need to have confidence in your doc.

Melia, could you have acid reflux?  If it's worse laying down I think that is a sign.  I take Pepcid AC and it's gotten a lot better -worth a try.  Tina, how are you holding out on the job front?

My younger pain in the behind boss has been gone for 5 glorious days and he is coming back to a flooded house so he might not be there tomorrow - now is it wrong to be smiling?

Jan, hope things are going well for you and with your kids.  Thinking of you and sending megahugs.

Rebecca, glad you are still holding onto your class(es). 

Caya, where were you going- western Canada?

Hugs to all!

Viddie I am sorry to hear about your MUGA score, and I agree with Melia, that is totally inappropriate….you should have had those results much sooner.  You need to be comfortable with your care.  I agree with Amera you should probably think about going to see a BC specialist before changing your treatment plan.

Melia, I never thought of valentines day like that….it is an extremely stupid time to have a floral holiday! LOL.  I guess you can thank Hallmark for that one.  Glad to hear that your energy level is back.  I think mine is up to almost normal also, especially since I have been on the Effexor.  I truly think that at least 80% of my fatigue was my depression dragging me down without me even knowing it!  Glad that I ditched that nasty feeling for sure.  Oh, and belly pain?  I would say it is unlikely to be anything terrible….remember the two week rule, and call your PCP if it does not go away. If nothing else I bet you could get meds for it.  Could also be stress…as you said, this is a rough time in the floral industry.

Amera good to hear from you!

I am on a mission to get every child in this house in BED by 10 so I can watch Skye’s show!!!!  I do not have any recording devices hooked to my TV so I have to watch it the old fashioned way.  I think that it is kind of cute that we will all pretty much be doing the same thing at the same time tonight.  I would almost suggest a chat session, but that would be a bit distracting I think.

Well, I am back to having issues with my PS again…I had resolved all the unpaid charges with my insurance co, and then paid the portion that I was responsible for.  Since my PS is not in-network, the amount I had to pay was fairly significant, and I was not expecting it because he implied that he would accept what my insurance pays as payment in full when I went for my initial consult.  It is possible that I misunderstood him, after all I was pretty much freaked out my mind when I was there the first time (I went straight from the breast surgeon to get my official Dx and set surgery date up to  him….talk about shell shock) Regardless, it was the right decision at the time, and I somehow scraped the bottom of the barrel and raised the money to pay the bill.  So once it was paid, I called the office and cancelled my appointment that was coming up for next week…seeing as there was no way I could afford a $150 consult (my deductible reset) much less go into surgery with him again and face ANOTHER set of bills.  So I thought I was doing the responsible thing by canceling, and deciding to move on to another Dr. Well, the office called me today and basically bullied me into reinstating my appointment, insisting that we “can take care of it” and that they “do not want me to be upset or stressed out”.  Well folks…I AM stressed out about this.  I do not have any more money left to pay this guy, and to be perfectly honest, I KNOW I need more surgery to revise my reconstruction…I am not in a rush to do it, I am not in pain or anything, but my permanent implant looks like the expander did (rather like a coconut shell sticking out of my chest).  I am really not sure what to do here….DH thinks I should call again and reschedule for next month, and go see another Dr (in network this time) in the intervening time.  I think he is probably right, but I do NOT want to call there and talk to the receptionist again.  I know I am being a chicken, and a big baby, but it is very upsetting and she is very pushy….and of course she is pushy about two very sensitive things…my boobs and my wallet. ARGH. 

OK, I just needed to get that off my chest (so to speak).

I have to chase these kids into their PJs now so I can be nice and settled in for MonsterQuest.

HUGS to you all.  Thank you for being there.

I am so excited - I've seen our Skye/Linda already!! Since I have it on dvr, I'm going to post during the times she isn't talking.

Rebecca, I agree with your dh - you definitely need to see another ps in network, and get another opinion at the very least. To begin with, they have been less than ethical about the financial aspects of things, and you are also not happy with your results. I realize these things need tweaking, so that isn't a deal breaker, but it is possible that you might be happier with another ps anyway. So at least get a second opinion. I really don't like the idea that they bullied you into reinstating your appointment - sounds like they're afraid to lose any potential business, and that isn't, ideally, what it should be about. However, there are a lot of plastic surgeons who get on the greed train and can't get off. I know quite a few of them, and they are either like that or they aren't - no in between. You don't have to call and talk to that receptionist again, though. You can leave a message, or you can have your dh call, or you can have your friend Mel call for you. No way you should have to subject yourself to being bullied or guilt-tripped into seeing him if you don't want to. So make an appointment with the other ps, asap, then decide.

Viddie, I think your friend's solution of going to her breast surgeon when she has issues is probably a good idea. I get good action from my oncologist, but if I didn't, I think I would go straight to my bs. He is very proactive. Great idea. I do think you might be happier if you switched oncologists - it really doesn't sound like you're getting what you need from your current onc. And if you are switching, why NOT switch to a breast specialist? It's not like you are having to see them that often anymore, so the drive isn't a big issue. Sorry about your MUGA results - I know it's worrisome, but I'm sure you'll get to finish your herceptin. At least, I hope you will.

Mary, you are absolutely right to be smiling!! I am smiling, too, in support of you. You've put up with more than enough from your boss - you're entitled at least to an innocent smile at his expense. I'm happy for your ds2, and hope his relationship goes well.

Melia, glad you had a good weekend, sorry you're back at work so soon. I'm sure you and your family could have used a few more days to relax and enjoy being together, but at least you had that. I, too, wondered if your abdominal pain could be reflux It does sound like it might be stress related. When I came down with that, it was just when I met my dh and got engaged. It was totally stress! Glad to know your energy level is back where it should be, though - that's such a good feeling. I'm not there yet, but I'm getting there, I think.

Caya, hope you have a safe trip home.

Oh, Rebecca, I love your student's essay about September 9. Kind of scary, but funny, too. I'm sure you see worse horrors than that. I tutored two friends through English comp., and was amazed at what they didn't know - I don't think that our school systems are turning out students who are fully educated - too much emphasis on self-esteem building, and not enough on real teaching, and that sort of defeats the purpose in the end, it seems to me.

Oh, Skye, I am LOVING YOU on this show! You are exactly like I imagined - can't wait to meet you in person!! You really did a great job with the interview process - guess you're experienced at that. I love all the Wisconsin accents, too - takes me right back to my college days. Have you heard anything regarding your biopsy yet? If not, call them tomorrow for sure, be sure they're on it. Otherwise, the Ta Ta's will be after them!

I had a great day today. Had my 6 month followup with my breast surgeon, who is just the best! He was amazed at how good I looked. I was his first experience with someone who had an unexpected delay of reconstruction after skin sparing mastectomy, due to the need for radiation. He was just thrilled - he said Dr. Spiegel was going to be really happy when she saw how good my skin survived radiation, and he was pleased at how well his part of the surgery turned out. Everyone who sees it is amazed at the job he did, so I wasn't surprised at that. He is the one who saved me from having the radiation at the facility where I had my chemo, where they do the old style blast everything style radiation, so I really owe him a lot. He literally saved me at the last possible minute. I expressed my frustration with the closed circle of surgeons in my area who all refer to each other, because they always have, and who are NOT up to date in the latest techniques. He said there is a lot of that, even in the medical center, and in all major medical centers. There is a lot of exciting and progressive stuff going on, but then there are these little groups who just do what they have always done, and refer to each other. I think that's really scary - and I have seen the results of that in a lot of my patients. He told me about a patient who had rads at the place he saved me from going to, who ended up, after a lumpectomy, with a BRICK on her chest, and lymphedema. He and Dr. Spiegel, my ps, consulted and decided that perhaps if she had a mastectomy to remove the hard as a brick mass her breast had become, her lymphedema might go away. She agreed to it, and it did! Anyway, it was great to see him again, and I didn't have to have my gallbladder or something out to see him - and I made an appointment to see him in six months so he can see the reconstruction results.

He says it will turn out awesome, so I'm excited again.

Ok, Skye, your program's over, so I've got to go to bed. You did great!!!