More Progression

[Mandamoo]

Hi Folks
No other way to put spin on it - wish I could like NEDenise! I have imagined that I have sarcoidosis, continually have my scans get mixed up with someone else's but alas I think I have to come clean with myself!

So TDM1 didn't work for me and I got compassionate access to Perjeta - we decided to try it with Carboplatin. I had scans today - 4 months down the track - significant progression. 15-20 new spots in lungs, new mediastinal nodes and spreading further up neck but not big enough to cause problems. Existing spots some the same others bigger - overall 30% progression of disease load.

We have a plan - I will keep on Perjeta and Herceptin and swap to weekly Abraxane. There are numerous cytotoxics to try yet but as nothing has really worked for me previously I am reluctant to keep gambling with likely little benefit.

If you meet me in the street you would think I was such a healthy 40 year old apart from the niggly cough. I can still pass people on my morning walks and breathlessness is not a problem. It is difficult to believe we started talking about end of life care today. My son only started school 3 months ago.

I naively have always thought I would get better - that I would be one of the miracle stories despite the odds being stacked against me. I am fast starting to lose that faith. I cannot yet fathom that I am at the end of the road. I do so much to heal my body. I seem so healthy - despite 2 years of chemo, I still menstruate, I have a full head of hair, clear skin and bright eyes.
Can I regain hope?

[conomyself]

Manda, you are amazing. I have hope for you - You will turn this around.

The abraxane will be just the thing.

I am sending prayers too...

Rachael

[CarolineC]

Amanda,

I am so, so sorry that this has happened. You DESERVE to have some regression! Is your medical team absolutely sure that hormones aren't part of the driver? What about metformin? Do you see an integrated doctor? What about hyperthermia?

You are doing so much and from your signature you haven't been on something like Abraxane for awhile, so I hope it works along with the Perjeta and Herceptin to obliterate the spots and nodes.

I'm enveloping you in a huge hug and please, please do not lose your faith.

[Mandamoo]

Thank you.
I have had my lung biopsied and have no hormonal involvement. The thinking is I am not likely to benefit from metformin - I think it is due to my body type etc... But I will ask the question again.

My biopsies have confirmed that I am still her2 positive and have her3 expression as well, I also have a p53 mutation. My most prolonged response has been when a pi3k inhibitor has been included in the mix - affinitor. I do not have a p13k mutation.

I have only ever had two treatments with a taxane so perhaps this will help.

I see a traditional Chinese medicine dr and have included many integrated elements in my healing. In Australia integrative Drs are difficult to come by - they exist but are considered alternative rather than truly integrative unfortunately and they do not work together with oncologists and vice versa. I haven't tried hyperthermia - I have looked into some German clinics but they are a very long way away from home and my children as a long shot.

My oncologist is wonderful and I have asked her to look into some more options including neflinavir and kevetrin (phase 1 trial of p53 drug) - she has told me never to apologise for having hope and that she has not given up and that I am amazing and she will keep working to keep it that way...

Right now, I feel good apart from a niggly dry cough, I kicked the football for 45 mins with my son this afternoon, I do most things I always have - while I am breathing there is hope.

[Bunty]

Oh Amanda, I'm sorry that you haven't had the response hoped for from the Perjeta. I'm an Abraxane chick (getting shrinkage again from it at the moment), and it is synergistic with Herceptin - not sure about Perjeta, but gee I'm going to hope it's a great combo, and you trailblaze for the rest of us here with that combo.

Your overall health will always be a huge bonus in getting through this, and I would love to run into you in the street, or kick a ball with you, or get over-taken by you on a walking track!

And with regard to your question about regaining hope, I believe yes you can.....

Marie xx

[KirisMum]

Amanda, my heart goes out to you. When will they scan to see if the Abraxane is working? There are so many different kinds of tumors, that might just be the combo you need. You say you've only had a couple of taxanes--was taxol one of them?

Interesting that you have a P53 mutation - is it BRCA 1 or 2? Kiri has a mutation, a p.D7E variant that she inherited from my husband. Its "clinical significance remains unclear." I wish they would do more investigation along these lines. The kevetrin trial sounds promising.

Keeping you in my heart and prayers. With your energy and great physical condition, you remind me of my daughter, and also a dear friend who has been living strong with Stage IV for 25 years. Always keep up hope.

[dearjilly]

I agree! The abraxane will be the drug for you.
Yes, you can regain hope. Yes, yes, yes!!
I try to tell myself that everyday.
I'm sending you some BIG hugs from one young momma to another.
Jill

[Redwolf8812]

You are amazing. You and yours are in my prayers.

- Penny

[Mary Anne in TX]

Amanda, I'm prayin' and believin'!

[IrvineFriend]

Hi Amanda!

I'm new and so proud of your post. I can't imagine being so young and facing these fact. But we all know people live long happy lives despite this. Or we love the days we have. I'm at that point.

You're in my prayers and I'm giving you a big cyber hug. You might not feel it but I did - I'm still doing chemo and home in bed - first day off from work b/c of it. I understand strength but now appreciate rest and recovery.

Your journey is far from over. There are options and I'm going to be checking up on you. If you don't mind :)

[Rolepaul]

Running a search through some non-published stuff that not many have access to. I will get back to you in a private email tomorrow. I am not sure any of this will help, but i have to look and see.

[JennyB]

Amanda,

I'm so sorry about the scan results I so wish they were somebody elses' too - like cruella De Ville (just watched 101 Dalmations with my little girl!)
Good luck with your new treatment plan - you're onc sounds like a keeper for sure.
Prayers

Jenny xx

[caya]

Dear Amanda,

I am praying that Abraxane will be your magic bullet. You are a Warrior Woman, and I hope that things turn around for you quickly. Everyday is a new day - with a promise of good things.

Sending lots of love and hugs from a fellow commonwealther.

all the best
caya

[Laurel]

Amanda,

Your post has touched me deeply and I so wish I could beat that cancer's snot out of it for you! Please never give up hope!

[Jackie07]

Amanda,

Your amazing physical and mental strength is going to help you tremendously in the upcoming battle. I'm certain your doctor will find the right treatment soon. Hang in there. We are sending you good vibes.

[dawny]

Amanda, I am sorry to hear this. Damn cancer! It is time you got a break, hopefully Abraxane will give that to you. I didn't find it an easy ride, but it got me to NED, so I have my fingers and toes crossed for you that it works well. It just doesn't seem right that you are feeling and looking good still, does it? At times I have hoped that it is all a mistake also.

Hugs to you
Dawn xxx

[Pamelamary]

Dear Amanda,
So sorry to hear these latest results, but I know you can't lose hope - not when you have those gorgeous kids to buoy you up! Abraxane seems to work well for many, and your new combination sounds good.
Will be thinking of you..... Pam

[NEDenise]

No! No! No!
Can you hear me screaming?! This cannot be happening!

Amanda, my dear friend...
no doubt about it...this SUCKS! Up...down...every-which-way-from-Tuesday!

The injustice of this whole mess is staggering. So many bad people in the world get off scott free...and terrific people like us...get screwed.

And, what about our kids?! What the hell did they ever do to deserve this nightmare!? Sh%#! Sh%#! Sh%#! I'm not even sure whether this makes me more sad...or angry. I bet you're having trouble deciding that too.

Honestly, you may have noticed...I don't do sad very well...so I think I may already have jumped to angry...sorry about the potty language.

But...and I hope this doesn't sound too "Pollianna-esque"...
without hope...
the anger is wasted...and we can't have that!
Rage against those lung mets! They hate that.

The fact that you are still feeling so well physically tells me that your body is not giving up hope. That alone makes me think this story is a looooong way from over. So, let's cut your brain and spirit a break for a bit...they deserve a chance to wallow in despair...but not for too long...or they might get stuck there...and that would be bad...very baaad.

Now...45 minutes of kicking a football...girl, I'm not exaggerating when I tell you that 4 to 5 minutes of kicking a football would have me wheezing and panting...you are amazing to me. Not just because you're able to stay active, but because, whether you're doing it on purpose or not, you're keeping life normal and happy for your family. That's hope in it's purest, most selfless form...IMHO.

And, the fact that you're already exploring new treatment options, and making plans also tells me that hope is still alive in there...it's just kinda tired right now. BTW...end of life care discussions do NOT mean end of life is near...it just means you are planning. Ted and I have had those discussions many times over the years...for both of us...long before BC reared its ugly head. Everybody should have a loose plan in mind long before they ever need it.

So...my expertise with lung met meds is non-existent...but having said that...you mentioned that your cancer hasn't had much experience fighting taxanes. My cancer hated TAXOL! And so did I...it was absolutely the hardest 8 weeks of this whole nightmare. I actually cried (something I've only done twice since this all started) and asked the onc if I really had to have the last treatment. It was misery. Painful, exhausting, misery. But, alas...it seems to have worked.

If my opinion matters at all...I really, truly don't think someone who is still feeling so well physically can be "at the end of her road" yet. It just doesn't seem like that can be true. I agree that the progression news is not good...but the fact that you are still so strong makes me think that treatment options still untried are the ones that will stop things in their tracks.

Realistically, neither one of us may ever be NED again...but that doesn't mean we can't see our kids finish high school...get married...I'm even hoping to cuddle grandchildren someday.

So...let's take a collective deep breath. Hug our kids...and jump back into the fight. Remember my friend...hope doesn't mean you're happy...it just means you're willing to keep trying...something I don't think you'll be ready to give up on for a good long while yet.

Sending you all the love and extra hope I have laying around! Prayers and healing too!
Denise

[karen z]

Amanda,
I, too, have been deeply touched by your post.
And I, too, am thinking that your mental attitude and physical strength will help you in this battle. I am also praying and believing.

['lizbeth]

Sounds like both you and your oncologist are an amazing team. I love your fighting spirit.

You deserve a miracle. Hoping Abraxane will take you to NED!

[dawny]

Amanda, read Denise's post again, she is a wise woman with wise words, don't give up hope

Dawn. Xx

[Sixpack]

Dear Amanda,So sorry to hear about your progression. I got bad news today that my cancer did not respond to TDM1. Progressed to bones (right hip and thoracic) and liver is enhanced along with chest wall. Husband, kids and myself are a mess:(

[Mandamoo]

You guys are wonderful! Here I am sitting in day oncology, hooked up and ready for my H, P and Abraxane. I'm cruising the net for wigs and Internet shopping.

I'm ok - it helps that I feel so good. I had a huge "dump" with my counselor on Wednesday and felt sooooo much lighter. My middle child is really struggling and when I picked her up from school on Wednesday she was pale, clammy and vomiting from a migraine. No school yesterday for ANZAC day and today she was worked up again tears and tummy knots - that's what I hate so much! It is not fair on my kids or my husband. I need to be here to love and nurture so I am focused on that.
I welcome all of your suggestions and surround myself with your hugs and love.
As I said to my oncologist - while I am breathing I have hope so 'on we go.'

[pwiswell]

I am so sorry about the progression. I feel for you and understand what you are feeling. I was first diagnosed with HER 2+ cancer in 2003 when I was 38. My children were 2 and 4. I have prayed everyday that I get to raise my children. I pray that you will also. Keep the faith and try whatever they suggest. It may just be the one that works for you. Good luck and I will keep you in my prayers.

[dawny]

Amanda, I found the best wig place to be Chiquel in Moonee Ponds. Nice bright salon, lots of different styles to try on. It is a hairdressing salon on one side, so you can get it trimmed to suit as well. They also sell wig stands shampoo, fake eyebrows, eyelashes, anything that you can think of! Helpful service too. I think I had my hair shaved and wig on by about week seen of Abraxane.
Hugs to you
Dawn xx

[Lien]

Dear Amanda.

This sucks. It truly does. But over the 9 years I've travelled in cancer land, I've seen people bounce back time and again. One day they find a combo that works for them, and suddenly the whole picture changes. The fact that you are still healthy and active gives me hope that you will be able to last long enough to find that magic bullet.

Leaving my kids behind was my worst nightmare and you are living it. My GP knows a lot about alternative medicine, and he has been treating me with mistletoe shots. It is an anthroposofic treatment and you can google it. Here's one article: http://europepmc.org/abstract/MED/11347286/reload=0;jsessionid=uq557oiMrnzq4d5wnprb.0

Iscador and viscum are good search words for this.

I wish I had more, as you deserve all the help you can get. Let me know if you want to know more.

Love

Jacqueline

[SoCalGal]

What about AVASTIN? I've had very good luck with that, and I think that Genentech still has a patient access program?
I always say that I cannot reconcile who I see in the mirror everyday with a woman with advanced stage cancer. Shake my head. I, too, can "pass" for normal, healthy. Well, maybe not normal, but seemingly healthy. It's a blessing to count and my mantra for the past 6 years has been, "I don't know how this is going to be okay, but somehow it is going to be okay" Whatever it means, it seems to reassure me. Keep your eye on the kids and stay out of anxiety-ville as much as you can. So many woman have had good results with Abraxane. I'm sure you'll follow suit.

[Pray]

Amanda, I'm heart sick so much sadness you are always in my prayers. Gods blessings to you and your beautiful family my friend,

Your friend, Nancy

[NEDenise]

Hey Girl!
Anything new?! I was thinking of you last night...around 7:30 my time...and you made me smile! :) Here's what went down...

I went to my son's concert last night, and as I walked the 200 yards or so to get from my car to the auditorium...huffing and puffing like crazy...I had to stop and chuckle, thinking of you...lung mets aplenty...running, walking, playing footall with your 'baby'...
and here I am...supposedly with healthy lungs...suckin' wind like geezer on his last leg! Stupid, crazy cancer!

The concert was excellent! (his completely impartial mother stated modestly) My son did the voice-over for a patriotic medley...quotes of Lincoln's Gettysberg Address - the kid could do radio! And, of course, the real reason for the concert...he plays a mean French Horn too.

Fortunately, the show was also long enough that I had time to catch my breath before the looong, forced march back to my car. :) I could have been driven back to the car...but I'd have to have 'bumped' one of the 80-year-old grandparents, or the guy on crutches from the car to do it...so I walked...sloooooowly.

I hope you have a terrific day! And, thanks for the giggle!
Sending prayers and love...
Denise

[Bunty]

Great post Denise, and I'm sure that will make Amanda smile - I did, but not at your expense, but at your spirit!!
Marie x

[dawny]

Hi Amanda, how are you going, have you had your second dose of Abraxane now? Feeling o.k.?

Thinking of you. Dawn xx

[Mandamoo]

Denise you have me chuckling!
I had my second Abraxane on Tuesday - so far so good. Just about to have a little kip but feeling ok.
I've had a difficult week as with the deaths of a couple of friends to BC - one who I was particularly close too and who was an amazing women and a fellow He2 gal. Also one of my children is having significant issues dealing with my disease and it is really tough going at the moment with her. We started seeing a psych yesterday with her so hope that helps but she is home again from school today 'feeling sick'. I have tried so hard to keep our life so normal but she is one intuitive little 8 year old who quite possibly is a very old soul I feel and desperately trying to teach me something!

Saw my oncologist on Tuesday and we continue to actively treat and she is attending ASCO and hoping to get some new ideas there for me.
Thanks for checking in on me gals. Xx

[CoolBreeze]

It took me 7 chemos before I saw regression. It was gemzar (with perjeta) that did the trick. So yes, you can hang on to hope for a while longer.

My tumor burden shrunk my 50% and now I have a rads consult (tomorrow) to see if we can zap some more away.

Keep plugging. It's strange how some work and some don't.

[KsGal]

Just wanted to let you know I was thinking of you today, and sending lots of light and positive energy your way.

[dawny]

Thinking of you Amanda, I hope your daughter is doing ok.
Dawn xx

[Pray]

Always pray for you and your family Amanda. Peace my friend.

[Mtngrl]

Dear Amanda,

I, too, used to hope against hope that I'd be one of those "miracle" stories. Every time a scan has showed that not to be the case I have gotten scared and sad and discouraged.

But you are so young, and your kids are so young! My heart breaks for you and your family.

I only had a few doses of Abraxane, and at the time it wasn't clear that I did have lung mets, but the little "suspicious" nodules in my lungs responded. Perhaps if I had stayed on it longer it would have knocked them all out.

I liked Abraxane better than Taxol. It was great not to have to have steroids, and the side effects were milder.

We always want to protect those we love from suffering of all kinds, especially suffering that we caused. But that's really not possible is it? I mean, we can avoid deliberately hurting others, but life always includes bad luck, calamities of various kinds, illness, etc. You are doing a wonderful job of modeling for your kids how to respond to adversity. You are resilient, persistent, and proactive. You are sensitive to their needs, and you respond appropriately. You have already given them that. They already have that legacy from you.

We are not the Source of the love our children need, but one expression of it. In the end, everything will be okay. Once you've done all you possibly can, the rest is up to God.

[NEDenise]

Amanda,
I'm sorry...somehow I missed the post about the passing of your friends. Just what you needed...
I'm so sorry for your pain and your loss. Beyond the emptiness their deaths leave...I'm sure their passing is an unwelcome reminder of your own struggles, and mortality. I know that's how the loss of loved ones affects me these days.

And, I'm even more saddened about your daughter and the pain she's in. My eldest is having a tough time right now too...but he's 15, not 8...so I don't think it's anywhere near as hard to watch as yours.
For my son, I think the way I look (not at all like the Mom he's used to seeing), and the fact that I'm totally exhausted all the time are really getting to him. He can't be near me without being reminded that I'm 'sick'. Of course, he's known I was sick for over 2 years now, but now he sees it every time he looks at me. And, he's old enough and smart enough to know that this is not like aynthing else I've had to face. For the first time...I think he's worried I might die on him...and it shows.

I applaud your decision to engage a therapist for your daughter. It can only help IMHO. Once again...I just want to say what a caring, involved, top-notch Mom I think you are! She's lucky to have you...and I agree...you're lucky to have her too. She very likely is trying to teach you something...though she's probably not even aware of what it is yet...or why. The ups ad downs of this cancer nightmare are hard enough on US...it just SUCKS that we can't shield our families from it...especially the little ones.

I'm looking forward to hearing about the innovative new plan you and your onc decide on. I'm just not willing to to believe that you're out of luck, any more than I am to think I am. We both have too much fight still left in us. I'm hoping Avastin is my magic bullet, and I'm keeping my fingers crossed that your magic bullet is coming back from ASCO with your doc!

Sending love and healing light to you and your precious daughter!
Denise

PS - as a teacher...with more than 25 years in a classroom...I can tell you with great authority that sometimes 'at home' is where kids need to be. I call them mental health holidays...and being with Mom is more important than ANYTHING that happens during any given school day. I also have very radical ideas about homework if you're ever interested! :)

[dawny]

Great post Denise

Go on, tell us about the homework!!......

[Mandamoo]

Lol! We have a plan for a mental health day too - one a month and she gets to choose and of course if she is really not coping she is home and there have been a few. Homework and taking a backseat too and afterschool activities. It is lovely that she needs me - I want to be there for her but I have two other children who also need me and a me that needs me to help me heal - quite a juggling act but we are working through it. Cancer is tough on our family like all others. We continually learn, and just as I think we are coping fine, my hubby thinks it is all falling apart. Ups, downs and arounds but I am learning to enjoy roller coasters - never did but I'm trying! Hold on tight! It's a long ride - it may as well be fun. :-)

[dawny]

Hugs to you Amanda, keep smiling!

Dawn

[NEDenise]

Amanda...
Any updates you're willing to give? I'm feeling hungry for news from down under! :)

Denise

While I'm waiting for news...Dawn requested my radical views on homework.
I hate homework! I hate it as a teacher, and I hate it even more as a parent! On the first day of school, I share this distaste with my students. They waver between skepticism and joy at the news. I also share this opinion at back to school night, where I assure the parents that while I am required to assign homework...they outrank me in their home, and can simply initial any assignment, and cancel it out. Done. Full credit earned. There is absolutely no homework in the world that should ever interfere with family time. Parents too seem skeptical. It's only after the veteran parents, whose older children have had me, attest to the fact that I'm totally serious, that the other parents get happy!

I also make sure that every homework assignment is "started" in school...in case anyone is confused. What a nightmare for parents AND kids when they don't remember how to do what's assigned!

I remember several occasions with my own kids that became a royal pain! One time, when I was teaching 5th grade, and my son was in 5th grade too...he came to me for help with math. Now, at the time, I had been a teacher for over 20 years. I had been teaching from the same math series he was using in his school for 5 years. I literally own shoes that are older than his teacher was at the time. You can probably see where this is going...

He asked me for help.
I showed him what he was misunderstanding.
His reply was, "That's not how Miss Long taught us."
"Hmmm", I said, "I think you might be remembering wrong...that's the way it's taught in this series."
"No, Miss Long didn't do it that way, are you sure you taught it right?"
"Seriously", I asked him? I've been a teacher longer than Miss Long has been alive! I've been teaching 5th grade math for longer than she's been a teacher. You really think I'm the one who's confused?"
Friends, the look on his face said it all.

She did not have a "sign the bottom of the page" policy. So we "fought it out"...checked it with a calculator...consulted with his older brother - who evidently seemed more reliable than mom, who had dared to question Miss Long's pedagogy...and agreed to disagree.

In the end, he came home the next day and grudgingly admitted that I had not been exactly right...but that I had been doing it Miss Long's way after all. Is it any wonder I hate homework?

Just have the kids read a good book for an hour! That's the best way to get smarter anyway!!

Denise

[dawny]

Denise, thank you for your views on homework. My kids would love your view. Especially my 12 year old son. He says "but mum, I have been working at school all day, how come I have to do more work when I get home?". "I'd rather read my book" usually comes.next! He would read all day, I think he gets that from me, I love to read.

A mum from school rang me not long ago, to ask if I knew how to do the grade 6 assigned homework, I Hadn't yet looked at it and thought " oh geez, we haven't even made it to secondary school, and we 'the parents) are having.trouble with the homework!". It just wasn't explained very well, we got through it, sheesh.

Hoping you are doing ok Amanda, and that you daughter is also

Dawn. Xxx

[Mandamoo]

Firstly to homework! I like your style (no surprises there) Denise! I find my girls' school pretty low key on the homework and assignments compared to others I've seen though we did spend the weekend helping Mic spray paint her space shuttle model - I am not looking forward to the space themed board game. I totally step back and let them do the work (or not as it is for Alex at the moment). A my son's school the no longer call it homework but "home learning" - go figure! Even funnier, we don't have parent teacher interviews but "learning progress discussions". I love the use of the language - cracks me up.

They spend so much time at school they need downtime and family time when they get home. I never get them working on holidays. I have a friend whose girls are 12 and spending all weekend and hours each night on homework that makes my brain hurt just reading it. Crazy.

Secondly, I'm doing fine thanks. One cycle completed. Now sporting a funky little pixie as my hair thins and I'm desperately hoping it will stay enough for me to get to a wedding without having to wig up next weekend. I enjoyed my week off this past week and my energy improved. So far just a general joint flu like ache that we are all familiar with - a little worse 2 out of the 7 days. Have my bottom troubles managed with regular gastro stop. I am feeling like my cough has dramatically improved in the past couple of days but is am trying not to get too excited as the weather is a little warmer (the cold sets my cough off). We have decided to wait another cycle until we scan as I seem pretty stable symptom wise and my tumor markers are stable too (never a good indicator for me but they had steadily risen for about 6 months). My onc is off to ASCO and hopefully going to find something new and wonderful for me if I need it but for now here's to this shrinking things to NED (why do I hear someone somewhere laughing as I write that?) - more mysterious things have happened. She said next step for me would be reinventing the wheel -oh well, I'm always up for a challenge.

[Mandamoo]

It was a student free day today for my boy as the teachers were writing reports so we had a morning of kicking the footy in the park. Here's a picture.

[dawny]

Hi Amanda, thanks for the update, sounds like things are going along pretty well. Good to hear. Nice not to have to scan too soon also. Keep up the good work, you will get an A in your "learning progress discussion" lol
Dawn

[dawny]

P.s. great photo!

[Bunty]

Great photo Amanda! He'll be playing for the Swans (!!) before you know it. I reckon your hair will be fine for the wedding!
Cheers Marie

[NEDenise]

Amanda
OMG! could he be cuter?! Now help me out..is a footy and American football, a rugby ball?

Home learning?...I'm not buying that one!
Home learning is stuff like: where did Mum hide the (insert name of junky snack here)...
when I do this to my sibling - this happens...
do carrots bounce...
how about eggs...
will the dog/cat eat crayons...
how long till the technicolor poop appears...
It's not related to classrooms in any way!!

But learning progress discussions...that sounds much more fun than parent-teacher conferences! My heart goes out to you on the project front...but I'm glad to know you're a supporter, not a do-er. On more than one occasion over the years I've had parents complain about the grades they got on projects. Of course they correct themselves when I call them on it...but by then the cat's out of the bag! :)

I'm glad the new meds are not knocking you out. And I definitely think the improvement in your cough sounds promising! My onc is off to ASCO this week too. Looks like we both picked go-getters! Good for us!

And, I'm with the other gals...I bet you get to that wedding wigless and lovely! Is the pixie like the one in our avatar photo? I love that look on you.

Keep feeling good...sending love your way!
Denise

[dawny]

Oh no Marie, he will play for the Cats, definitely!! Lol

[dawny]

Amanda, which team does HE support? I think he probably should get some say in which club he plays for! Xxx

[norkdo]

Amanda! You listen to Denise right now!! (this is your nagging auntie here) hahahaha. But really Manda, you are an Aussie!!!! You are a Melbournian!!!!! You are going to survive dammit!!!! (forgive me please if this is out of line) You are a star! So supportive like the Aussies here all are!!! My prayers are with you and you come here please to these boards no matter how you feel. We are here for you.
Nora

[Mandamoo]

LOL! He is a Hawker! He would be mortified to think of playing for the Cats or Swans but at least you didn't suggest Collingwood! (I am a Lions Supporter - no joy there this year...)

Denise - here is Melbourne we play AFL (Australian Football League). I however, come from the north of the country where Rugby and Rugby League are considered the game that is played in heaven though living in Melbourne you cannot help but get involved in loving the AFL. As for calling it "footy" - just another of those "Australianisms"

My hair is currently perhaps just a little shorter than in my avatar. I think I will make the wedding but was thinking this morning that maybe I would get myself a lovely long wig - dang - maybe I'll get a few!
And Yes Nora - I have plans to survive - because that is just what I am planning to do!

[NEDenise]

Hey!
If you decide to get multiple wigs...check out the website for the American Cancer Society http://www.tlcdirect.org/default.aspx?crcat=branding~tlc-wigs&crsource=adwords&crkw=%2Btlc%20%2Bwig&crcampaign=12135330754&gclid=CL64kIHhuLcCFYKd4AodkEUALA

The prices are unbeatable...they accept returns...I loved my wigs from there. I paid $350 for a wig at a salon, and it was beautiful...but the ones from TLC (the link above) were under $50 and looked just as nice! I can't imagine they wouldn't ship to Australia, but if they won't...you could have them shipped to me, and I'd be happy to send them on to you. :) No pressure...I know Dawn posted about a great wig shop near you...just supporting that hunger for hair-do variety! When we're having fun...cancer is miserable! Always a good thing to my way of thinking! I've already decided that when I need/want another wig...I'm getting a curly dark one, and a longish blonde one. How many reddish brown heads of hair does one woman need?!!

So...as an uninformed American...just to clarify...in the photo, Alex is kicking a rugby ball? What I'd call a soccer ball is actually a football...and the team Alex will play for...when he gets a little taller...is the Hawks...also a football team? Or, am I still waaaaay off?

Denise

[KsGal]

First off, I wish I had a teacher that had even remotely the same attitude towards homework as Denise. I had a teacher in middle school who used to let us have the last 15 minutes of class to start our homework, and that made me LOVE that class. Kudos to you, Denise, for putting family time first!
Im so glad you are feeling better, Manda. Im sure your scans will show improvement. And what a cute little guy! I miss having smaller children. My youngest is a teenager, and well, don't even get me started on that!
Now, tho, I am super confused on this sports issue...what is the difference between rugby and football? And what we call football here...passing with the hands and such, does that exist anywhere else? lol. Blame Denise for this..she asked all those questions and now Im confused! :P
And if you do decide to get a long wig, let us know how you like it. I have stuck with the short ones up until now, but just a few weeks ago I started thinking how I would like a longer one that I can maybe do some different things with..hair clips and bands and such.
Big hugs to you, and as always prayers and positive energy.

[Mandamoo]

Oh dear - trying to explain the intricacies of the different football codes could get very messy. AFL is a game where the ball which is like the one used in rugby (a bit small and narrower) is mostly kicked about a circular field toward a goal - the ball is passed forward rather than back (usually) using a hand pass which is like punching the ball. You can only run a short distance with the ball without hand passing, kicking or bouncing. A kick through the middle posts is 6 points, through the outer posts is 1 point.

I a shedding more and more so today I used the Cabrini Wig room service at Brighton - an amazing service where I was fitted with a brand new wig for free and then also received a number of hats, sleep caps, beanies all donated! Wow! I went long! I haven't been long for years - it is very sexy... I need to get the fringe trimmed a little but I am not complaining. I can also purchase another later if I want to. I can't imagine wearing this one in the heat of summer.

And.... My oncologist rang me to tell me she had good news - my markers have dropped - first time in almost a year - they have steadily risen since about August last year! Good news indeed coupled with my reduction in cough. Here's to long term benefit!

[Pamelamary]

This sounds promising, Amanda - and we all could do with good news right now! Just flick those long locks over your shoulder and keep smiling... Pam

[Bunty]

Yay yay yay on so many fronts! Firstly Amanda on your excellent description of AFL, secondly on your sexy new wig, and thirdly, and best of all, on your TMs dropping, and the cough reducing. I reckon you are going to rock that wedding on the weekend.
Best wishes, Marie x

[NEDenise]

Add my Yay to the chorus!!

First - Tumor markers dropping...WooHoo! In fact, any good news call from an onc...double Woo Hoo!!

And, reduced coughing has to be such a relief!

Sexy wig...AWESOME...but hey, what doesn't look sexy on someone whose tumor markers are dropping? I mean really...the inner glow must be dazzling!
So what shade are your new long locks?
What do your girls think?
When can we expect a photo shoot?

Now, as to the AFL thing...I get the passing, and the differently shaped ball...but I'm off to google the circular field. Even Quidditch can't boast a circular field! I was just getting used to my guys being CFL fans (Canadian Football League), and learning those rules...
I even tolerate their fixation with the whole World Cup Extravaganza.
I don't think they're aware of this circular field thing though...I'm pretty sure that would have been too much for them to resist.
They do watch the NFL but our team, the Eagles, has had a bit of a rough patch, on and off the field...so the bloom is off that rose a little in our house.

As an aside...my eldest has embraced rugby. He's built for it, for sure. And I like to think that my Irish heritage is the reason his mind and body are so suited to the game. Read that...he's built solid as a fire plug and is stubborn as a mule! His speed and grace on the field are most definitely NOT attributable to me in any way though. Unless it skips a generation, like baldness...those qualities definitely come through his Dad!

I hope the wedding is fabulous! And, really...maybe a picture or two of your new "do" might just show up here?
Stay happy!
Denise

[dawny]

Yay from here too! Amanda that is great news, fantastic! Yes, we would love to see the long locks, says me who doesn't even have a photo here! Amanda you are the only one who knows what I look like!

Hope you have a great time at the wedding Amanda
Dawn xxx

[NEDenise]

Dawn!
That's teasing! Now you almost have to post a picture!
:) Denise

[michka]

Amanda, I love all your posts and I am so happy your markers are going down! I am keeping all my fingers and toes crossed.... Michka

['lizbeth]

Tumor markers dropping? Awesome. Better breathing, more awesome.

I'm so happy for you with the news.