Starting Chemo in JAN 2007

You need to call and have a chat with the infusion center manager.

It's way too important. YOU are way too important!

Cindy

As part of my employer's fund raising for Relay for Life, I challenged my coworkers to make our goal. If they did, I would remove my scarf. Yesterday we had our last official event (a hysterical wheelchair relay with staff and residents) and we beat our goal by over $1000. So in a brief ceremony I removed my scarf so everyone could see my regrowth.

I've about 1/2 inch of very thick straight hair that is salt and pepper with a couple of extremely white spots. It will grow out streaky I think.

Anyway, everyone was so sweet and complimentary "We don't want to see you in a scarf again!" So that's it. I'm now permanently topless unless I need to shade from the sun.

Tomorrow I'll walk the Survivor's lap at Relay. I've thought about that. Hope I don't bawl the entire lap around the field.

Cindy

Yeah Mel. So glad you are home and feeling okay.

Yeah Cindy on going topless. I have very curly salt and pepper hair right now. Maybe 1/2 inch 8 weeks out. I am getting impatient too.

Very tired lately due to hot flashes waking me up. I am realy wiped out. Blech!

Okay, off to a school play to see my 10 year old play the cello. Toodles all!

okay Cindy I am ROFL.
love you guys
caya

Miszsissy,
Sorry you missed the chat again - we have alot of fun.
I'm only 4 weeks out from chemo and my hair growth is there, but barely. I think I am also going to look for a shorter lighter wig to get me through the summer.
Sorry to hear about your friend's aneurysm - but as you say it is treatable - can they do the endoscopic coiling procedure - this is when the neuroradiologist goes in through the groin and stuffs tiny platinum coils through the artery into the aneurysm. My DH had this done Jan. 31, 2006 - and he is fine.
Interested to see your Tamox./Effexor plan to take the pills in the a.m. - I will be starting Tamox. on July 10th - I already suffer from night sweats, I guess I should try the Tamox. in the a.m. then - it's the 20 mg. - any other suggestions from anyone?
I hope I won't need Effexor, but if I get more hot flashes, I will ask my onc. about it.
Feel a bit nauseous today after my first Herceptin, but this is normal - not too bad, I'll probably take a Gravol and that will help.
DH got back from NY last night safe and sound - we have a very quiet weekend planned, which will be nice.
caya

Caya, I forgot to say anything about your husband's aneurysm. That must have been absolutely terrifying. Your family has been through so much! Time for it all to turn around. My husband went through a job change last fall right before my bc all hit us. He had and continues to have a tough time with it; loved his old one, hates the new one (his old company went bankrupt due to embezzlement, quite a shock) but at 62 he is lucky to have found a good job. He only needs to work a few more years, but I know his pain over all this has gotten ignored by me during my battle. I was great the first two months, but then once I was diagnosed, esp at first when we were expecting a worse prognosis, I was pretty distracted with my own situation. I think both of us will be glad to see all this end, and try to get our old lives back. Or at least new lives with less drama. Your husband must be awfully young to have this happen, and you both must have been terrified.
Melia

Caya, do you ever wonder if the stress of Allan's illness triggered the bc? I know they say the tumors are there for years. But Steve's job started looking shaky in the spring of 06, and I had a clear mammogram in March 06. Then he was laid off in Sept 06, went thru two months of real depression, got a very good job that started Dec 1. I was diagnosed right at the end of Nov. I often wonder if it was there, very small, and then just went rampant during the stress of trying to bolster him up, the financial worries, etc. I doubt a dr would agree. And I am not sure, just wonder if maybe that was it.

Hi Ladies,

I’m feeling a little better today. The headache is better, however the chest pain is still there. Today I see the rad onc after my radiation, so I’ll see what he says.

Melia, I had swelling in my ankles/feet from Taxotere. It didn’t happen until I was 3 weeks out from my last treatment. It got so bad I couldn’t put any shoes on. I am now on diuretics prescribed by my onc. I took them for 8 days and tried to get off, but then filled back up with fluid and was 8 pounds heavier in 2 days. Keep a close eye on it and call your onc if it doesn’t go away or if you suddenly gain weight.

Viddie, I agree with the rest of the girls. Don’t hold back on anything that involves your health!

I am going to walk in the survivor lap of the relay for life as well, it’s a week from today. I am a little nervous that I will burst into tears as well because I get choked up just thinking and talking about it. We were going to get a team together but I nixed the idea and said we’ll do it next year. DH and I are going to order luminaria’s for people in both our families that have passed away due to cancer.

Skye, ok this is kind of graphic but I think the reason why you aren’t peeing straight is because you don’t have pubic hair and your pee can easily run over your skin. At least that’s what happens to me! Ok, done with that!

Nancy, I am worried about libido as well. George and I were talking about it just the other day. He has been so patient over the past few months, poor guy. We’re hoping to stir things up next month when Ally goes to camp for three weeks!

Caya, what a year for you and your family! That must have been so hard on everyone. Big hugs!

I take my tamoxifen in the morning, around 9. Figured that time is the most consistent I can be. So far, I don’t feel any difference with the flashes at night, about the same as it was before I started taking it.

It sure has been a long week. Glad it’s Friday. I think DH and I will have a margarita on the deck this evening! Nice way to cool down a busy week.

I missed Relay for Life here this year as it was right after one of my chemos. We are going to a local DogsWalk for Cancer tomorrow that benefits ACS. Should be interesting getting the two kids and two dogs there by 8:00am. I’ll try to remember to take some pictures.

My youngest has had a temp all day – turns out she has strep. My other DD seems OK so far, but I’m sure she’ll be next. At least I don’t have to worry about my blood counts being low anymore! If I get it I’m going to bed for a week and blaming the antibiotics for making me tired. (Just kidding) (Not really)

Mary – how are you feeing today? Any luck with the rads? Want us to all fly up there are kick some butt for you? Or, give us the phone number and we will all start calling. I really hope you are feeling better, let us know.

Skye – hope you finished the book outline. Since you weren’t on the chat I didn’t have to worry quite as much about coke spraying out of my nose and onto the keyboard.

Caya – Since I’ve started taking the tamoxifen I’ve been actually sleeping better. I still have hot flashes and they are most frequent in the mornings and evenings, but they are not waking me up at night anymore. I don’t know if this has anything to do with the tamoxifen or if it’s just a coincidence and has more to do with being further out from chemo.

Cindy I love that you are going topless. Sounds like a fabulous bunch of coworkers. I’ve been thinking how bad all of this would be if I still had my old job (I quit last year to start my own business). Anyway, the “old” office was full of a lot of very young people who would not have understood or been very supportive and there was no personality in the personnel dept. Those folks were ruthless. Anyway, just makes me grateful not to be there. I am glad so many of us have a supportive work place.

Melia – I don’t like the stress theory, but I’ve heard it before. A colleague of mine (who is a bc survivor) suggested that when I was diagnosed just a few months after quitting my job. That job (as she well knew) had been incredibly stressful with a political situation in the year before I quit. Who knows – but I hate to think of that as being true.

Lynn – Glad you are feeling a little better. I hope the rad onc can help.

Joni – let us know how the scan goes.

Rebecca – we’ve had several similar problems with insurance not paying for things because someone coded something wrong. We’ve been lucky each time that it was cleared up with just a phone call and the docs office resubmitting with the proper code. I agree that insurance companies can be infuriating and honestly don’t we already have enough crap to deal with?

Hello everyone, the chat last nite was fun.

Well I had my big appointment today, and my oncologist was so positive it was uplifting!! The bone scan I had in Nov 06 showed something on my one rib, well that is totally gone, as of the May 16 bones scan. My left hip still shows something, but it was basically the same as it was in November, so my onc said let’s wait for the next scan, but this looks like an old injury. Every thing else was good.

We also talked about my liver. He said you can never be 100% positive that it is cancer unless you do a biopsy, but as it shrunk on chemo that tells them that it more than likely is a met. He said I only had the 1, and that the MRI slices and dices every mm of your liver. He felt that the Tamoxifen would keep this in check.

I will be going every 4 months for the next year for repeat MRI’s and Bone Scans. All of my blood work is very good, and the doctor said I was one of the healthiest people he has seen with Stage IV cancer. He also cleared us for our trip to the Mediterranean in October.

I will be having repeat scans done at the end of August, and have to meet back with him in mid September to review everything.

I asked him about going back to work, and he said it was totally up to me, but there can be problems if you go on and off Long Term Disability. So ladies, I think I’m officially “retired”. I’m going to work on a volunteer basis with kids. The oncologist has said wait until September, because he wants to make sure I rest enough after my radiation is over, had ZAP #9 today. So I’m going to volunteer at the two different elementary schools in our little town in the fall, and also see if I can work at the Alberta Children’s hospital (Calgary) as a volunteer.

Thanks for all your help you guys, hopefully I haven’t been a downer for any of you, as this last month has been very tearful and frightening.

Big Hugs…Joni

I'm so happy for you Joni! What wonderful news! Congratulations on your retirement, you will most likely get way more gratification from volunteering than you would going back to work. You have not been a downer at all, this is what we are here for. Glad to have you back to your ol' self!

hugs,
Lynn

Hey again ladies,
Lynn, thanks for the pee problem prognosis. You know, that idea about not having the hair there as urine fence had also occurred to me but seemed too out there but I guess it makes sense. And Rebecca, you too? At least now we know the true purpose of pubic hair.

Joni, I was ecstatic to hear all your good news. I hope that means you can relax a little mentally. I know we are all rejoicing with you.

Rebecca, I have never heard such a lame insurance screw up. I do believe something has to change with our health care because as it now works, they insure those who have the least possibility of getting sick for as much moola as they can possibly extract, then if we do get sick, deny payment for whatever whim strikes them, and also make it impossible to ever get insurance anywhere else again. Bigtime wrongness there!

On stress causing cancer, I think I've read that it isn't the stress itself, it's when the stress is so prolonged or severe that it produces an overload of cortisol, causes your immune system to drop, and that allows the cancer to get a foothold. I do think that is what happened to me. My husband had surgery for prostate cancer nine months before my dx. It was in February and he couldn't do teh snowblower or anything, he was off work for 4 weeks and not well for longer than that. Then six months before dx a former colleague went psycho on me for no real reason and wrote a crazed letter that put me in severe shock. Shortly after that I had 2 books come out and had all the publicity stuff while finishing another one. I was a wreck. My oncologist said my tumor was a type that had not been there long, maybe only a few months. I have since decided that I am much more important than my books and will get my needed rest and play no matter what the schedule, and that toxic people will occur now and then and I shouldn't let myself be affected by them so deeply.

Of course here I am sweating a deadline again, haha, but for the first time in my life I have asked for a deadline extension and because I had cancer they are giving it to me.

My simulation went well. Fortunately there is a gourmet produce and bakery shop on the way home from Mukwonago as well as from Burlington so I have extra motivation to go there. Monday starts the real thing! We are meeting some friends for fish fry later this evening and I plan to have a nice brandy old-fashioned. Lynn I will silently toast to your margarita...here's to Mel's good surgery, Joni's great diagnosis, Caya's first Herceptin load, and everyone who is growing hair on legs, head and elsewhere! (Rebecca let those leg hairs wave proudly) -- Skye

Happy Friday everyone! Melia, yes, my Taxol problems started with the swelling in my feet and ankles, and progressed up to 25 extra pounds of fluid accumulating in my poor legs. Don't let it get as bad as I did - it takes a long time to bounce back from that. I think mild to moderate foot and ankle edema is a fairly common side effect. Mine was noticeable but not really troublesome until the very end of Taxol. I had to stop taking my diuretics right before my surgery because they were dropping my blood pressure, and while I was in the hospital my BP stayed in the 70's and 80's all the time, so I didn't get any diuretics then either. I notice now that I'm starting to swell again in one leg - the one that was the worst before. Guess I'll start them back up again and see what happens. Hope you're at least symmetrical. I doubt that you're going to miss any of your treatments - you've made it so far I think I'd quit worrying about it if I were you. But you are a worrier, aren't you? I agree with Cindy, you should start weighing yourself daily and keeping track.

Cindy, I wish I could have been there for your scarf-removing ceremony. What a neat way to make the transition - an d now, lucky you, you can go topless. Hope you enjoy your Relay walk tomorrow. That sounds very cool. I seem to have just missed one here, again. Cindy, maybe you could get someone to take a photo of you now, since you're officially "topless."

Lynn, Skye, Rebecca - the "can't pee straight" discussion cracked me up. That is one thing I hadn't actually noticed....but now that you mention it... Guess we're pretty much all in the same boat, but it amazes me sometimes. If someone just happens to mention something, everybody jumps in and says "I thought I was the only one." That's how I feel anyway.

I'm lucky to be able to use the Premarin cream topically since I'm ER/PR-, and it helps a lot in the libido department. At least it certainly did for me. Taxol is so hard on all our sensitive tissues - I'm not sure I ever would have found a way to get interested in intimacy again without it after one unpleasant attempt shortly after I was done with chemo which sent me running to the doctor saying "am I never going to be able to do that again?" My oncologist ok'd the premarin since I'm triple neg, but I've heard that not all do. Mine is of the belief that patients have to be able to have a life worth living, fortunately. And with the topical estrogens, the idea is that very little is absorbed systemically.

Rebecca, your story involving insurance and the MRI truly is a perfect example of what is wrong with the insurance industry! That is one of the most ridiculous things I've ever heard. The worst thing is, think how often they get away with crap like that.

I agree with the theory that excessive, severe stress can trigger cancers. It is known that stress messes with your immune system, and when your immune system isn't able to do it's job, cancer is one of the things that can happen. I hadn't thought of this in respect to my own diagnosis until today, but I did have an extremely stressful, traumatic episode in my life about 7 years before my diagnosis. I wonder whether that was when my tumor got it's foothold? Not that there's one thing I can do about that now, but I still wonder. It was the kind of stress that would do something that radical, I think. Hmmm...

Joni, just read your post!!! I am so thrilled for you - what excellent news you got today! It could hardly be any better than that. Now you can really enjoy that cruise - Dan also. You both must feel so relieved. I am so happy for you, and no one deserves it more. And now you get to retire, too - that's so great that you'll be free to do volunteer work.

Now, if Mary just got some good news today also, I'll be happy.

I sure enjoyed chat last night - I think we should definitely keep that tradition going.

Hugs.

Is anyone else doing Relay for Life?? I'm going to our local walk tomorrow morning, but this is my first one. I'm excited about it! I had rad #19 today, half way there 8-) I am starting to get burned, but not too bad.

Mel: Ya know, I think that is part of the guy thing. I know my DH is equally "suppotive" when it comes to things like that. A girlfriend or family member to help might not be a bad isea, you want to take of yourself. Let hubby do what he does, love you!

Joni, yeah hooray on the great news. I am so relieved for you!

Mel, my DH hasn't been the most supportive guy throughout this either. He has come to several appts with me and chemos but has found lots of excuses to be out of the house. Even when he was around, he wasn't, if you know what I mean. My parents were around for surgeries and chemo and I think that was his excuse to carry on as usual. It did hurt me, but I don't think he is capable of much more. I don't think he is atypical either, unfortunately. I guess it's better than him falling apart. I think that would've been much worse for me.