2005 ROCK-TOBER CHEMO GIRLS

Anonymous

Mary,
17 years old... that is so sad. What is the lesson there? News like yours make me question my faith. Maybe it brings out the best in the people around her? I don't know.

Anonymous

mary -
It didn't take you long to figure out a way to bring a smile to this girl's face. You're a very kind and thoughtful gal...she'll never forget it.

Anonymous

Debbie -
I MISS your antics! I need a good laugh. Where are you?...I hope you're not up, up and away! LOL

ake

mary...i'm so, so sorry you're going through this. and it makes sense that you are as upset as you are. at any age, cancer is not fair, but definitely not for that young an age. it's disgusting. they've got to find a cure for this disease or at least figure out what is making more and more people, more young people, struggle with something like cancer.

a woman in my support group had a recurrence last year. she was someone i was incredibly close to. she helped me through every step of my treatment when i was going through chemo. she ate only organic, went to the gym every day, was in perfect shape, and had the most positive, strong attitude of anyone i had met. when she got diagnosed with a recurrence, i sobbed. just sobbed. i couldn't get past it. but, then suddenly i wrote her a letter...telling her how strong i thought she was. and i wrote at the bottom, "i will stand by you and help you get throug this as you have helped me." it helped me in some way to go from being someone who was helped to someone who could help. i don't know if that's any reassurance on how to cope with this, but it helped me make sense of it all. we just switched roles. and i realized that just because this diagnosis happened to her, it didn't mean she was going to lose the battle again.

so, use all the knowledge and kindess and strength and realism that you gained last year to help this woman in your life. sometimes the best way to be supported is to have the love and support of someone who went through it all too.

we're here for you. any way you need us.

ravdeb

Mary..that is a great idea...to knit the socks and make things for her. You will feel good and she will be incredibly moved by it, I'm positive. You are so kind. She's lucky you are there for her...

TracySeattle

Mary - I am so sorry, lots of (((hugs))) and prayers for both you and your friend. If anyone can be a support and comfort to her, it will be you. She is lucky to have you for her friend and we will all think positive that the doctors will pick the most effective treatment and that it will work for her.

We love you and you can always come here to us when you are sad....

Paula15089

Mary - what terrible news...
only 17!! cancer really is random. Thats why its so scary... you can be young, healthy, happy, strong - and it can still happen...
I know you will be the greatest support for her. and we are here to be YOUR support network.

Scooby - no, i am ok to continue Zoladex. Its the Tamoxifen that can cause blood clotting or something like that.

Victoria - bummer about your esterogen... what other supps are you taking?

Ravdeb, my onc is the same - no tests, nothing. She just asks me how i am feeling, any concerns - and thats it. But like you, i cant help thinking, what if there is something that i am missing, something that perhaps COULD be treated if caught early? But, Amy is spot on, saying that your quality of life goes downhill when we are worried about tests results. I had the WORST days of my life waiting for my pathology results... after biopsy, after every surgery - it was pure hell. Hearing the results was traumatic, but also a relief somehow.

ravdeb

I'm not sure there is a lesson here at all, V... I look at it as part of a big picture...something we can't really understand today (nor can I try to..it's too sad and horrible in my eyes) but that maybe, in years to come, somebody somewhere who was a part of this young girl's life, or even a bystander, will remember this situation and then will understand why it happened. I'm a firm believer that there are reasons we can't understand right away for why these things happen. Doesn't really help us today, I know. That's just my take on it. I've been told that my faith is strong. I don't know if that is it, but..that's what I see.

RoseMarie

Mary - so sorry to hear about this young lady! She is blessed to have you in her life and I know you will bring comfort to the family with your love and your experiences.

All this talk about mets and recurrence has me a bit rattled. Add me to the list of folks with no scans, no blood work, etc. Yesterday I was very dizzy for most of the day. I woke up today a little off balance too. Course, you know what I'm thinking. I'm extremely congested right now so it's probably an inner ear thing but I've never felt this way before and am hoping it all clears up!

Linny - so glad to hear about Isaac!
Michele - your kitchen plans sound beautiful!! You're not going to want to move after you fix up your house, lol!
V- I must say, I don't understand all the medical stuff BUT - big hugs and hoping the docs get down to the bottom of all this for you!
Deb - I like your "words of wisdom."

We have a meeting with Kiersten's teacher, the school psych, and the guidance counselor on Thursday. My dh kept pointing out every time Kiersten did something "non-autistic" all weekend. I wanted to scream (and have a temper tantrum!) Really, all I want is to help her be able to handle things more appropriately...

Ok ladies, day light saving time is a pain...my kids couldn't understand why I was making them get ready for bed with the sun still shining bright. NOW, I've got to go wake them up!! Lots of love, hugs, and positive vibes coming your way today!

cathy987

Mary–Just got caught up on the past two days posts and was very sad to hear the news of your young friend. Once again the women here have put their arms around you and held you with their words. They are right when they identify you as a person of much kindness and faith. Your ability to figure out what you can do in this situation–knit something for this young woman–is typical of your kindness. Your faith is what will give you the words that will help this family as they have helped you.

V-have been thinking a lot about you this weekend. Hope the move has gone smoothly. Sorry the sale was not what you had hoped for. Also hope you and your doctors sort out what’s going on with your estrogen.

RoseMarie–Here’s hoping your meeting for Kiersten answers some questions for you and that it helps you to chart a course for helping her. To my way of thinking it really doesn’t matter what the “label” of the diagnosis is (which I am sure your dh is afraid of) but what you can do to make your lives together more manageable. Not knowing what to do causes me the most stress.

Well, I’ve had a wonderful four days with my sons in the sun. Am currently in Minneapolis waiting for my flight to Fargo. Had a long layover here so have caught up with what you’ve been doing over the weekend.

Should be home later this afternoon—meeting with the boys has given me a big to-do list so should be busy for the rest of the week. Lots of love coming from this neck of the woods today too.

ake

rosemarie....i'm glad you're having that meeting for kiersten and i hope it's helpful. i agree about diagnosis vs. not. sure, diagnoses help structure things better, but in the long run, it's about strategies, coping skills, and support. good luck!

ravdeb

Cathy...you are always on the go. Glad you enjoyed the warmer weather..guess you are back to colder temps for a bit longer.

RoseMarie..that's great that you have that meeting coming up. It will help. It's not the label...you can discard the label afterwards..it's what it will do for you. Besides..it's very hard to diagnose autism...everybody defines it differently. What's important is to organize her behaviors and then set a strategy so she can manage better...and you, too! Good luck!

No scans or bloodwork either? Sometimes, when the mood hits me, I see this as a positive thing..means they don't think there's any reason to be checking cuz they aint gonna find anything!!!

We change our clocks at the end of the month. I love changing them..it means summer is coming.

Debbie..where are you?? Are you riding on your balloon? Maybe I should look outside??? Hope all is well with you.

Mary..still thinking of you...

debbie444

Hey - I am here. We were busy over the weekend making some doors ( i say we - Roger cut them , routed them , hung them - will glaze and paint them, I offered words of unwanted advice and tidied up after him!) I can finally see the house taking shape, we intended doing it all in a year but i was diagnosed just a few months after moving so things kinda didnt get done and my house stayed a 70s timewarp!!

I have never had any labs done, only the bone scan after my ooph to check where my bones were at in th eosteoperosis stakes. And do you know, I dont think i actually am that bothered. If its going to happen , its going to happen , whatever i do about it or however much sleep i lose over it. Th arimidex is making my joints ache so i am finding work harder but apart from that i forget about it.. When i hear the little 3 year old boy i work with who has CP saying ' I want to run with the others' while sitting in his wheelchair, it makes me realise that there are very few people who dont have some problem or other. One of the cups we award at school each year was donated by th eparents of a boy who died of cancer when he was 10 and at our school.
I guess we know of more people with reoccurrences - if i had diabetes i would know more people with diabetes , if i was blind i would know more blind people etc.
We change our clocks on the 25th - i love light nights. My balloon rride is 7th April - getting excited now.
As for getting nearly hit by a bus, nothing as exciting as Lauras story ( but i am beginning to wonder if we were actually separated at birth - that does sound like a Debbie moment!!) Mine wa caused by vanity. I was 16ish, and was trying to impress a boy , so refused to wear my glasses - they were so uncool then!! I am so short sighted that i culdnt see th ebig number that they have on th efront of the bus so walked in front of it to squint up at it. UInfortunately the bus was moving at the time. I was pulled out of the way by the young man in question so my plan kind of worked. with my glasses on i realised that i didnt like him that nuch anyway!!
Mary - not sure what to say. I hope that when you know more it will turn out to be something very treatable.

Debbie

ravdeb

Debbie..glad to hear you were door advising and all is well! I am ROFL over the bus incident. Not the part about almost getting hit but the part where you didn't like him that much once you had your glasses on. That cracks me up!!

You have a good attitude and I'm going to try to adopt it..when it comes it comes. I have those same words..just need to believe them. I'm really not all that paranoid about it..just wonder sometimes how they will know should I have it. But..I guess ignorance is bliss!

Anonymous

Debbie -
OMG - I needed a good laugh! OMG Your sense of humor is awsome. I can't stop laughing...

and

Quote:

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...I offered words of unwanted advice

---

So typical and so true... LOL

mary -
Hope you're feeling a little better today. The initial shock is always the most emotional and difficult part...but I bet your proactive approach has already helped you.

Anonymous

Cathy -
Glad you had a nice time! Was it hot enough there to lay by a pool? The computers worked at our resort, but I tried to log on at the airport with our laptop but the Cancun airport isn't wifi yet... But, our Nextel walkie talkies worked from MX to Illinois! We left one walkie talkie at my house with my Mom and we were able to check in on she and Buddy.

RoseMarie -
Thursday will be interesting, hope it goes well.

marymelodi

Thanks to all for your support and words of wisdom. Still very tender hearted, but as usual, time passing helps to dull the ache some.

Haven't had courage yet to go look for the e-mail her parents might send to those of us who want to "stay in the loop." Today they were meeting with a pediatric oncologist to make a plan, I think. Ironically, this same doctor treated her older brother for lymphoma 6 years ago. They are coming to the hospital where I work and where I was treated myself. It is one of the best. I know that for sure.

Life can sure hit us hard sometimes.

Hope all is well with you all. I am thinking good thoughts for you all, even though unable to write specifically at this time.

Mary

TracySeattle

Mary, I am sure there are several of us that would like to send cards to your friend throughout her journey.... Should we send them to you and you could get them to her? PM me....

Curlylocks

Good Evening my dear sisters,

I have my support group meeting tonight.

Today went by in a flash. We converted to a newer version of our payroll system at work, had a major blip this morning and everyone showed up as “unknown employee”, like omg no one is getting paid this week.LOL. It all worked out and was able to go about my normal routine for a Monday, tomorrow will be the next test to see if they actually get paid the right money!

It looks like the weather here this week is going to be mild so all the snow will melt but according to the forecast the temperature is going to drop again on Friday and snow, what the heck is up with that?

I started wearing my lymphodema sleeve today as I have noticed my arm is slightly swollen over the past few weeks and don’t want it to get any worse, oh the joys…it is so not comfortable. I guess though if it was loose they would not have fitted me properly for it. For those ladies wearing the sleeve do you only wear it during waking hours?

Deb- I can picture how wonderful the kitchen is going to be, but oh our pocket books are bursting! Your friend sounds like a wonderful person, wish my close friend was more in tune to my emotions concerning bc that way. I do have a three bc survivor friends locally so that helps tremendously and of course all my sisters here! It is too bad that the medical system has gotten to the point that sometimes you are just a number and DO have to speak your mind and be your own advocate. What kind of refrigerator did you buy? We cant wait to move and buy a new fridge, stove if it doesn’t already come with our house. We have had ours since 1986!

Victoria – I am sorry that your sale did not work out. If it means having to put stuff out and allow others that can use it to take it—at least you don’t have to move it with you.
We will miss you if you take a break. I cant bear to pull myself away from the boards although some days it is tough seeing bad news. This is a strong sisterhood and we are here for each other through thick and thin.

Linda – glad to hear that little Issac is adjusting to his new hearing world. I am with you this board is kinda like my online support group.

Laura – I don’t have labs done and my oncologist has never suggested them. If you want a comfort level about your liver, ask your oncologist if he would do the liver enzymes test, is it a blood test?

Mary – big hugs to you sister. It is totally unfair that this young girl should have to go through this cancer crap. Don’t feel like you have to apologize for posting bad news. You are hurting and we are your sounding board. Knitting something for her will give you comfort and bring a smile to her face as well.

Amy – your words and thoughts are also proof of the kind person that you are in wanting to give back to others.

Rosemarie – I hope the dizziness subsides, an inner ear infection can cause this. Also I don’t know about tamoxifen but Armidex can cause dizziness, that is maybe something that you can check out. Have you had your blood pressure done lately? The new kitchen will be nice but we so want a newer home and with less property. I hope that you get some answers soon for your daughter.

Cathy – did you win or loose in Vegas? At least you had some warmer weather and enjoyed yourself.

Debbie444 – as my dad would say “every job needs a supervisor”. Are you taking the vitamin d and calcium with the Armidex? My knees ache sometimes and my ankles sometimes swell and my feet hurt after I have been on them all day like yesterday.
Your bus story made me laugh, thankfully you were not hurt. I had to wear glasses in grade nine and was suppose to wear them all the time, they would be on my face when I left the house so that Mom could see what a good daughter I was. I got around the corner and pulled them off my face. I had a boyfriend at school and he never knew I wore glasses and I use to squint or copy someone else’s notes as I couldn’t read the black board, talk about vanity.LOL.

Tracyseattle – are you all moved in yet?

Have a good evening, gotta run.

Love you all.

Michele

Anonymous

Tracy -
That's a great idea...I would love to do that.

Michele -
Thanks. I think if he thought it was necessary he would have suggested it. So, I think I will be a "patient, patient" and hold out for 3 months and have it done at that time.

-------------------------------

TracySeattle

Nope, not moved in yet. I am taking it a little at a time. I am getting there slllooowwwwwlllyyyy. I will be moved out by the end of the month, but then I will have to get everything put away at the new place. Tonight I went over and finished up packing my clothes. I brought three containers home and got them put away.

This Saturday I am taking a short break from moving to go help the American Cancer Society package all of the Daffodils for Daffodil Days which are Monday and Tuesday of next week. Do you all remember getting Daffs at your cancer center last year? When I came out of my radiation appointment, they gave me daffodils - it was really nice.

Well, I am off to bed here pretty soon.

Love you all!

Anonymous

Tracy -
You have got to be exhausted. Moving, is A TON OF FRICKIN' WORK! My ca center didn't have Daffodils...bummer...I love spring flowers - hmmmmm...in the morning I have to remember to check my garden and see if spring has sprung! LOL Thanks again...Lavender and chocolate...my favorites!

linny

Mary, I am so sorry about your young friend, so tragic and senseless. My friend who had a mastectomy last Wed (previous bc was 8 years ago) is recovering - I sent her an email, she answered that the surgeon found more than he expected, so she is concerned about prognosis. I am very upset for her.

Someone on these boards posted a link to a very good article from John Hopkins about bc recovery - I can't find the link again, did anyone see it?

I've been really bad, and have not starting taking the lipitor. The doctor prescribed it weeks ago - I am just so annoyed that I need it because the tamoxifen caused my good cholesterol to fall. He wanted me to take it for 3 weeks and then take a blood test. Anyone else taking statins?

I don't like the time change, I never did. I am a morning person, and like bright mornings, it just doesn't feel right to me.

Linda

Anonymous

Linny -
I am so sorry about your friend. Please keep us posted. I'm a morning person too. This morning was weird...I woke up but thought it was the middle of the night! Hang in there. I hope your friend will be okay. Be more specific about the John Hopkins link...I'm sure someone will chime in.

Graycie

Boy, I can't keep up.........I went away for the weekend, well just to a friends to dog-sit. All I can say is what an experience. I went with a friend and actually we did have fun. I had to laugh at my grandson. He thought it was strange I was sleeping over he said "I thought just little kid's slept over at their friends". I told him I am a little kid, at heart anyway.

Mary, All I can say is that is sooooo sad about that young girl in your church but she is so lucky to have you to help her through this. I feel so bad for her but you are such a wonderful person and I know you will be her rock.Your sweetness shines through and through and she will be so appreciative if you make her those nice slipper's you made us....It sound's like cancer run's in her family. What a shame.

Rosemarie, If it makes you feel any better I get dizziness sometimes when the weather changes. My doctor told me it is a middle ear thing. My daughter also get's it when I do so that made me feel a little better. Not that I want her to have it but if we both feel like that than I figure it must be a weather thing. We both have allergies and sinus problems too. Good luck with your meeting on Thursday. At least now maybe you will get some answer's to help ease your mind.

Cathy, Glad you had a good time with your son's in the sun. How is your weather back home? It is supposed to go up to 55 here today......Yipee, but then cold again on the weekend.

Debbie, You are so funny.....lol......sound's like me and my husband except I offer a lot of unwanted advice but I am always right........lol

Michele, Are you doing the kitchen yourselves? You are making me want to do mine but I don't think my husband will go for it since we just got new counter's a couple years ago.

Tracy, No Daffodils here. Never heard of that day.....Too bad, I like daffodils.

I agree with you girls on the time change. It is hard to get up when it is dark out. I like it at night though.......

Off to work, I hope everyone has a nice day.

TracyNY

This clock change is whooping my ass!! I get up at 7:30am when I should have been in the shower and done all my putzing by 7:15!! Needless to say I am frazzled but hey, it'll smooth out soon enough.

I went to the Philadelphia Flower Show last weekend, I'll post pictures at some point, it wasn't as great as in previous years but the trip was not a dead loss. I bought a $455 blouse at Neiman Marcus for $40 among other things. Yes, I went to Lenox, and yes, I bought more china.

Michele: With the sleeve, once you get the swelling under control you can pretty much do what works for you. I find consuming a lot of salt swells me up so we I plan to overindulge I will massage twice a day, wear the day sleeve and the night sleeve. I am pretty stable at the moment so I skip the day sleeve but massage in the morning and wear the night sleeve. You'll figure it out eventually.

TracySeattle

Michele - the PT told me the same as what TaDah just said. She basically said that I should experiment and see what seems to work the best. Problem is that my case is pretty minor - so I am not always sure if there is a problem that maybe I am not feeling.... I haven't been fitted for my sleeve yet, but that will happen soon.

Wow, I thought the American Cancer Society did Daffodil days everywhere. Volunteers sell bunches of 10 Daffs for $10 or with a vase for $15. You can also donate a "Gift of Hope" which is the Daffs & Vase which is donated to a cancer patient or a hospital. They view the Daffodil (first flower of spring) as a sign of Hope.

I am hating the time change too! I get up at 3:45am which is now 2:45am - that is in the middle of the Frickin' night!!!!

Our flowering trees are blooming and there are primrose, daffodils & crocus coming up - It is Spring in the Northwest!!! We have beautiful spring flowers here, problem is that it is usually grey and raining! Next month is the Tulip festival where there are fields of Tulips for as far as you can see.....

TracySeattle

Hey! When is Kelly supposed to be back???

I heard that there is a wild fire in Corona CA. That is where she lives! (I think...).

Kelly!!! Are you back?

I am missing MaryAnne too! Wonder when she will be back?

marymelodi

Sisters:
First, I want to thank everyone for your kindness, caring, and concern for my young friend and her mother, also my friend. I feel better myself with a couple of days perspective.

Her parents sent out an e-mail to report on the visit with the oncologist yesterday. They are still trying to determine what kind of cancer she has. They sent sample to Harvard for some specialists. It is looking like she has some very rare, and even more rare in children, form of a cancer that begins in the digestive tract and spreads to lungs, liver, and ovaries. So far, CTs show no lesions on the liver and now they are thinking the fluid in her lungs is not from tumors. They are still doing tests on her lungs though to find out why she is having breathing problems and looking all over for other tumors. The good thing is that when the did the abdominal surgery they did not see any other lesion in her belly. Bad thing was some cancer cells in lymph nodes. It looks like the plan will be to have radiation to shrink tumors and then some chemo to attack any rogue cells in her body. She may not have alot of chemo. The full plan remains to be seen.

The e-mail sounds upbeat and positive. Her mother is a wonder. She was so very supportive of me, after nursing her older son through lymphoma. She is the only person I knew who had ever been to the radiation center. She would bring her boy there every day and wait for the treatment. We compared notes alot and talked about the doctors and nurses.

I do remember daffodil days. I did get the flowers last year. I'm going to call and see if they are doing it again this year. Perhaps I can make a donation. If nothing else, I could take some to my young friend.

Tracy, your offer of cards is so very kind. I'm sure it would be welcome. Yes, send them to me. If you don't mind, I will not share her real name here, in public. Our recent "troll" visits make me wary. I think most of you have my address. Send them to "Natasha" (the young girl) and or "Cathy" (the mom) in care of me. These are fictitious names but I know they will not mind and your good wishes and encouragement will be gratefully received.
I remember how cards cheererd me up so much.

I am so grateful to have found you all and to have bonded as we have done. You are magnificent women in every way and I cherish each of you. You are so kind and so thoughtful. I am inspired by you all.

Mary

TracySeattle

We love you Mary!