August 2010...anyone starting chemo besides me?!
Comments
-
Cal - I am speechless! What an incredible vindication that what you experienced on tam was real! So often we experience things and are poopood by the doctors. Rude to take the call by the way and she or the nurse should have called you last February!0
-
Cal- what is scary is that it took them 9 months to go over this with you! WTH!
I agree with Omaz- we know our own bodies better than the drs and when we feel something is wrong we HAVE to go with that instinct- OOOH and i would have so socked that women for taking a cell phone call while she was supposed to be talking with me!!!!!
Rachel- your hair looks good! And your son is so cute! Oh funny i was gonna mention this mall down here in corpus had an "iceskating rink" and we thought we werre going to let the kids go til we saw it! It was i kid you not a 15x30 area with plywood and something , like pastic on top, and some sort of thing that blew "snow" in a small maybe 2 foot area... i guess ppl down here in south texas will accept anything LOL
0 -
kel - tell them they should wave some of those bills since they sat on this info since February!! I can't believe she'd say that and then answer her cell - what an a$$!0
-
Good day, warriors-
I have to compliment you all on showing great restraint in regards to my hair update! I know, they are very exciting updates, and your silence is indication I have quelled your appetite for my hair updates...for now at least!
Tex: I am so sorry never got back to you on the prev landlord and owing you $. It sounds like TX law has your hands tied. Not like I have to tell you this but It is time to kiss ass. Just call her and get her in the "yes" mode by saying ‘wasn't I a good tenant?' ‘I did not damage your property, did I?' etc... and then finally say well, don't you think I deserve my $ back? I have kids, bc, out of work, holidays...can you please get it back to me? Do whatever you have to. I was an LL in CT and there is no way they would get away with that stuff here.
Sptmm: you are on the bus, sister! I have 5 interested so far. I am going to probably officially register the team at the end of January because then the fundraising starts! At that point I will know if we are taking a minivan or if a bus is in order. In any case, I will keep you posted.
On the gas prices, I always use my Stop and Shop points to get that price down but, yes, I do need to move but would probably go to NYC or LA anyway so costs galore once again! It is the same all over. My friend in Tokyo complains also! There is fiscal mayhem there as well. I don't know about LI but I know NYC is having tons of muggings and robberies etc.. and in CT it seems like a bank is robbed every single day. More to this point, my friend told me a 7-11 was robbed at knife point a few nights ago! Sounded like a domestic crime to me!
Rachel: hockey is great...love the pic of your son! Reminds me of my brother when he played pee wee. Your hair looks good! Nice photo. I am not much for football but I do like hockey. I go to the Whaler's once in a while in Hartford. They are back...only 2nd season, however. I think football is very barbaric but I do like hockey! I guess b/c at least in hockey they wear so much gear and there is a lot of skill involved...lot of skill.
Calamtykel: holy shit! I cannot believe they found that you have some esoteric blood condition that could have, when combined with Tamox, killed you. I don't blame the docs etc... when they don't find stuff that is really weird; I do think they try their best and we all have radar for the lazy ones that we need to avoid but thank god you listen to your body. What a mess that could have been. There is no reason why women should not be pre-tested for this. Very good point.
I go for follow ups but I don't see the onc...I only see nurses. They check my armpits and all that crap but I just don't see the onc anymore.
Ckptry: get up to the main campus and get in the neuropsych program. Yeah, the bs with the staff acting like body guards...I know what you are talking about. You are damn right they are getting well paid and don't worry about offending anyone. You have to be your own advocate....have to be.
Also, best wishes with Aidan. You know, no pressure, but I still count on him to save the Nets! Not my business but I don't blame Colum for stopping his meds. I get nervous with how much med they so easily dole out to kids these days. I understand a good portion is needed but still, I think some is just dished out. It was not like this when I was a child either. At least I was not on anything, nor were my brothers or sisters and it just did not seem there was ever recommendations for it and it did not seem that other kids were either. I remember in high school there was a classroom for the "wild ones" but that was about it. I still just don't think meds were so prevalent.
YOU ALL NEED TO GET ON TWITTER. I am serious...there are so many updates, bc groups, announcements about developments, I follow Giuliana Rancic (Fashion Police) & was just dx'd. There is also a well know reporter from NY circles that was recently dx'd. You just connect in such a different way on Twitter. IF anyone actually gets on, let me know and I will give you the short list of the bc entities etc... What is also nice, and unlike FB, you don't have to just "like" a page and go to newsfeed to keep up with bc groups and developments. You can also make lists on Twitter so you can put all the bc stuff in one list.
Well, just watched the Buble Holiday Special...he sounded great! Very nice show.
Good times, girls!
0 -
I just read more about the Factor V mutation - women on tamoxifen with factor V are FOUR TIMES as likely to have a major clotting event on Tamoxifen. WTF! And FIVE PERCENT of the population has this disorder! That means that FIVE out of every 100 women on tamoxifen are walking around like ticking time bombs??
When this can be discovered with a simple blood test! What is WRONG with our medical community!!!? What's the point of bulldozing through "breast cancer awareness" if we're going to kill women with a stroke when it can be discovered with a simple blood test? And the other gene mutation makes it 30% more likely than the general population to have a blood clot--sheesh.
HOLY MOLY! grrrr!!!
Yeah, I agree, totally not appropriate that she took the call- fortunately it was like 2 minutes but when she came back, I whipped back the curtain half dressed and said 'NOT COOL to tells someone we need to talk about your bloodwork in a cancer center and then LEAVE!" She apologized profusely -- UGH!
Off today for some fun Christmas stuff - going with friends and family to see the big gingerbread house contest display in Morris County Arboretum (Carolyn wondering if you ever did this before!) I'm pretty excited. DH used to work for Nabisco in East Hanover and every year they had these winners from all over the country displayed in the lobby. The kids don't remember it, so this will be great for them to see something similar. Then we're making our OWN here on Saturday!
The tree went up this past weekend - and DS had a friend over Saturday and another on Monday. So happy he's got two friends! He's been kind of a loner since he's shy and has aspergers', but they had a blast together. Next week going to take them all to NYC -- things are so busy - I think I'm going to cancel the mammo and surgeon until January. After yesterday, I don't need more stress before the holidays....
0 -
kel - never heard of the gingerbread contest-it sounds like something the kids would love
0 -
Carolyn - here's the info! It was WELL worth it -= it's huge!
The only thing I didn't like were the volunteers policing it - they approached my DD's 16 year old friend who's actually in college, and told her she shouldn't have her Iphone in there and shouldn't be taking pictures - that you have to be over 18 to be taking photos.
Ridiculous. THere were kids running around with cameras everywhere ! But aside from the sticks in the mud, this was GREAT! http://www.dailyrecord.com/article/20111205/NJNEWS/312050041/Gingerbread-Wonderland-Frelinghuysen-Arboretum
0 -
thanks kel - we have alot of stuff going on this weekend but will try to figure something out. I wish it ran a little longer. The kids love gingerbread houses and I bought as kit already (sure yours is from scratch;-)
all -good visit w/ dr yesterday, going to try a med switch. She was thrilled with how much he's grown developmentally in the last 6 mos, speech is clearer and he's able to express what he's anxious about. She also said it's very encouraging that he is able to keep it together at school despite his anxiety and of course it's understandable that he falls apart at home b/c he's exhausted from working so hard.He's also very imaginative; she said there are monsters all over our house, toilet monsters, tub monsters,...even though part of him knows it doesn't make sense he can't let go of them. We're going to wean him off one med and try a new one. She said we want a decrease in the anxiety and then 6 mos of stability and then we can look at weaning off the med. She's hoping by then the behavioral interventions we'll do through his local psychologist will have given him better tools to deal with it.
Liz - we don't take meds lightly. We did two years of behavioral intervention before we tried meds, and I take him into NYC b/c I want him in the best hands. We went through 6 mos where he didn't sleep more than an hour or two at a time , 4-5 hrs a night and it was awful for all of us. He had zero impulse control. When I saw the difference the meds made I wished I had tried them earlier. What helped me decide was he said one day I feel like I'm always mad and I'm always in trouble. I realized it was true, but didn't know he did. I got my happy boy back. I know what you're saying, my parent's tell me all the time how kids got by in school. But there were the "bad" kids in my school who got passed along without learning what they needed, and alot them didn't have positive experiences in school and didn't have happy endings in the real world. I don't want Aidan struggling b/c he has some issues that are beyond his control. That said I would never criticize a parent who chose not to medicate, it is not an easy decision.
Carolyn
0 -
Good evening warriors-
I have an interesting article for you all (compliments of Twitter!):
This doctor is arguably one of the most powerful and influential in the oncologic community, as it were. I think it is definitely worth a read. I am not so much interested in the story of how he came up but am more interested in the fact that he feels we are a "moonshot" away from finding a cure. If this guy believes we are getting close, there is no disputing it. I think it gives us a lot of hope, hearing these kinds of words coming from this powerful a person in the cancer arena.
Ckptry: that is so heartbreaking that he told you he was always mad and in trouble. I probably would have cried. Honestly, I think the meds are doing great work with kids who need them but as my best friend is public school teacher, she has seen a lot of misuse firsthand. In any event, so goes the world, I guess!
I hope you all are doing well. I skipped out on my MRI this week...well, actually they scheduled me for the tube and I am one of those that can't do the tube so I have to get scheduled for the open one. I hope everything will be fine.
Take care and have a good weekend-
0 -
Ckptry I am happy for you son that he has a mom who listens to him. That he can amass good experiences is a really positive indicator for his future. Always feeling mad and in trouble is what my oldest son experienced. He was on meds for one month and it was a wonderful month.
This was in the early 70's when fear of the meds and doing pharmaceutical intervention got a bad name. I had a GP who didn't "believe" in ritalyn. I so wish I had insisted he continue on ritalyn, he was a happy kid that one month. His social struggle and his lack of impulse control caused him and the rest of the family lots of bad times.
I do agree Lizzy there is some abuse, adults taking the kids ritalyn for instance.
HAIR, I cut my hair myself just like I have done for about 30 years. Well............ all those crazy curls on the ends went away and the hair left does not have my usual managable curl and waves. I could cut my own hair with a reliable result because it was curly. Straight hair does not lend itself to self barbering. First the Bozo look, now like Joan Jett or something.
Laters
Ginger
0 -
I changed my avatar to show what my hair looks like. It is growing into a point at the top of my head! I hope when it gets some legth on it that it will calm down.
I finished what little Christmas shopping I am doing this year and am now ready to sit back and just let it come and go. My brother will be here next week, so that'll be nice. Other than that, it's likely to be a blue Christmas for me. Sorry, don't mean to be a downer. I hope you all are having a great holiday season!
0 -
gingerThanks for the support. I'm sorry your son had that experience. it must have been so hard seeing a difference on the medication but not being able to pursue it. Hair - I say that I wake up with troll doll hair and after alot of work am able to shape it into a nice mullet;-)
kelwe went to the gingerbread houses - amazing!! note to self - next year bring treats. Aidan kept asking the people working there when the 'tryouts' were - he though they were going to eat the houses- he was a little grumpy towards the end. i was hungry looking at all that chocolate!
lady How are things with Mark? I'm sorry you're having a rough time. You have really been handed alot to deal with over the last 2 yrs. I think alot of people struggle around the holidays. Things are supposed to feel merry and bright and just don't.Wishing it wasn't a blue Christmas for you.
We got sent to collections for one of my echo bills - it's at a hospital that's in network for us but they send it out of network to be read- we didn't realize until I'd had a few. And Colum had spoken to them about a payment plan and they agreed then sent us to collections anyway! I'm glad to be here but resentful ofthe money I'm throwing at cancer related stuff. l feel guilty that I'm not working and that this debt is my fault - even though dh doesn't blame me. Idk, I just find myself angry lately. I keep thinking of all the things II'd rather buy the kids instead of an echo or a colonoscopy;-) I have 5 drs appts in January., and I'm supposed to start colon ca screening. I'm trying to focus on the positive but sometimes..... I know others are struggling with the cancer money pit.
Hope everyone else is well, I'll try for a better attitude next time!
Carolyn
0 -
Hello my little warriors!
JUST THINK of how far we have come since last December?! Good times!
How is the holiday season treating you?! A huge park not too far from my house has a large lake and sits on roughly many, many acres. In any case, they do the Festival of Lights and put dolphins and swans in the water, light up all the bridges, put white light animals all around the park...it is majestic! Something I look forward to every year. I really enjoy the music, decorations and spirit of the holiday but as for the capitalism and all this ridiculous gift-giving, they can shove it!
Ginger: Joan Jett..hell yes!!!!!!! That must be one heck of a look! I am still in curl bombs but 2 things have happened: first, it actually long enough to use my straightener and it actually covers my ears finally! I have naturally thick and curly hair...I like the thick but not the curly. For this reason, however, it takes a long time to get an appreciable length going.
Lady: u r stunning! Just stunning! BTW, on watching the holidays come and go, I live in capitalism central up here in CT and last night I went by a palatial mall that in years past would have been a mob scene. The parking lot was, not joking, barely 35-40% occupied. The economy sucks and our lives have gotten more challenging as a result never mind all the other day-to-day crap so I am with you on watching them come-and-go IN PEACE! And quiet, quiet, quiet!
Ckptry: every bill from Yale has a different account number. More to this point, I am up to 10 different accounts. It is so hard to even keep it all organized. Our healthcare system all but sucks between the greed, the capitalism and the fact that for all of this we are not even as advanced, and in some cases lagging behind, countries with socialized med.
Tex: how is it going? Have not heard. Hope all is well.
I am off to run some errands. Good day all-
0 -
finally i got some time to get online! Expect to see me more often until jan 17th when i go back to class!!!!
Okay so far only 3 of my 4 classes have my final grade posted B in math :P and an B in biology, actually surprised that i even got a b! And an A in speech communications... wondering what i got for nutrition- which is also a biology class
Lady- thats so funny! that one wild hair sticking up LOL
Lizy- all i can think is OH WOW! (chin to the floor) it is so sad that he lost his dad to the evil he is working hard to erradicate....
I have been busy with finals last week, took my lst final on thursday- then i had to get my house looking like a home and not a trash bin LOL my family doesnt do much in the way of picking up after themselves, but finally its looking good!
DONE!
0 -
Tex, you're amazing!!!!!!!! I think you deserve a prize!
Carolyn - we went to Trader Joe's - not far from there in Florham Park and got little gingerbread men.
They aren't as good as home made, but they are still better than a regular store brand! Of course, any time we are in Eastern Morris county, we head to Trader's - so we got a bunch of goodies.
And I hear ya about the bills and crap. It truly stinks.
I found out today that we owe the nutritionist over $400 going back to more than a year ago because of DH. he thought they rolled his bills onto me but they didn't - they kept it separate. this really stinks because until we pay he doesn't want to go back. I know they will work with us - the receptionist is a close personal friend of mine. But I don't want to keep owing, so DH will have to stop - just when I got him going back because of his weight. Meanwhile I continue to battle the state which continues to deliberately drag out the insurance issue with NJ Family Care, forcing us to pay a premium that we don't owe. Just not fair.
I've determined tonight to just stop worrying and spinning on all of this. I don't know if it's hormones or what; but these past couple of days I've been so on edge - like I just can't relax--worrying about stuff. I'm a little disoriented about the holidays because of my dad not being here. I guess I feel a little down too - remembering when I was a kid and how great Christmas always was! I don't know if it's that way for my kids. I am doing things with them but I don't know - kids today are different or something. I hope they grow up with good memories.....
Started my wrapping today -- this year it's a lot of "little" goodies - cute pairs of socks, hair ties, etc., and keychains for DS - he's 7 and really really into key chains. I splurged and bought them a video game each and one "big" video game that they were dying for but I told them I wasn't getting -but I figured split between the four of them it wasn't too bad. Everything else is stuff from garage sales. Fortunately that includes some decent lego sets and stuff!
Other than that, I just feel kind of "homeless" mentally this year. I think it's just the drastic changes that have occurred over the past two years - the cancer, the loss of ANY kind of financial stability and of course, the loss of my dad last February......
Maybe I'll watch another Christmas special with the kids tonight.
0 -
Here is my Grand daughter visiting Santa for the first time. She didn't want to be away from Mommy and told everyone at the top of her lungs.
Next year we'll get the keeper shot.
Ginger
0 -
ginger the pic didnt show up for me
0 -
Good evening warriors-
I hope you all are doing well. This holiday running and doc appts are wearing me out
I am tired!Ginger: that pic did not show for me either. It is great that your dgd expresses herself so well!
Omaz: what's shakin in the desert?! How is your friend? Hope you are doing well.
Sptmm: what's shakin on the island? This weather is wonderful! I just put $800 worth of oil in the tank and am so glad I have not had to use much of any. I love it! Hope you are well.
Ckptry: I like the new avi...looks great!
Well, time for sleep! I was so very entertained by watching that whack fest, the GOP debates from Iowa tonight! The entertainment value is just incredible.
Night all-
0 -
Hi Lizzie - We have a very windy day in the desert today! I am off work and going to the dermatologist for what I think is shingles - but it doesn't hurt - but it looks just like them - so I think I got the kids version. My daughter has her first real driving behind the wheel lesson today and it very nervous. All our cars are manuals so she hasn't learned yet, hopefully she can get the basics with the teacher and then learn the stick. I am feeling really stiff this last week, but I think it's from the shingles virus. Hopefully it'll get better soon. We are off to the Grand Canyon over the holidays. Are you doing anything special for the holidays? How did your tree come out this year?0
-
Omaz: nothing special for the holidays. Probably midnight mass and some visiting but I am not traveling. Unfortunately I am having some post-surgery complications and I think I have bronchitis or something. I was at my friend's the other night and when I laughed really hard I would start coughing. When I was leaving she asked if I was using Halls or any cough drops. I said I do use them once in a while. She is my bf and I don't think she wanted to alarm me but I think she felt I might be brushing off a cough that is trying to tell me something.
How is your friend? Is she still in the hospital? I hope she is out and home for the holidays. That was one scary situation.
Enjoy the Grand Canyon. It has been years since I was there!
0 -
Hi Lizzie - my friend is home and has worked up to using a cane. She and her husband are hopefully coming for dinner next week. I do have shingles but it doesn't hurt so the doc said it is a mild case. She prescribed some medication but I am not sure if I need it. What complications are you having ?0
-
Hope everyone has a wonderful Christmas. Time seems to fly by...to think that one year ago, I was finishing up chemo...last Christmas, I was still in the post-chemo recovery world! We are heading on vacation to Cabo after Christmas...we are all looking forward to the break. Work is crazy busy and time just flies by while I am there. Merry Christmas and happy last-minute shopping!
0 -
Merry Christmas Rachel - Have a fantastic trip!
0 -
Omaz I hope you are feeling better. Is shingles contagious? I am not sure?
HUgs Ginger
0 -
Omaz: shingles? How would you get that? Hope it is gone soon. I don't want to get into the complications...it is a never-ending road for me, however, I will say that. It is a nice holiday season and I want everyone to enjoy. At some point I will rejoin the living!
I am really glad your friend is doing better. That is very good news.
Rachel: jealous! Cabo is one of my favorites and I *love* Cabo Wabo tequila! So you are going to be there for NYE?! So lucky...I wish I was going to be there. I like Christmas in the cold and NYE in a warm climate. These past 2 years have sucked! Merry Christmas to you as well. I hope you have a great time in Cabo (still jealous)!
Night all-
0 -
I had chicken pox when I was a little kid and the virus goes into the nerve roots afterwards and becomes dormant. Then later in life for some unknown reason it wakes up and starts growing in the nerve roots. then it travels down the nerve to the area of the skin that that nerve goes to and tries to make a break for it. It forms a rash and blisters. I think the fluid in the blisters is contagious by direct contact if someone has never had chicken pox or the vaccine. Contact will give someone chicken pox not shingles. I was told to avoid babies and old people and people that are immuno suppressed (AIDs). I am lucky because itis a small outbreak and I didn't have any blisters that were there for very long (I think they must have formed and popped overnight) and it doesn't hurt. Thanks for the well wishes.
0 -
Omaz I am sorry you have shingles but glad it is mild. I went for the vaccine the day before I moved west. I had surgery already and was going to start treatment out here shortly after moving so my only chance was to go before we moved. My aunt had BC and got shingles during treatment as did my friend. I wanted to avoid shingles myself at all cost.
0 -
Omaz- sorry you have shingles as well but glad they are mild. My sister got shingles when she was really young, i'd like to say under ten- they pop up every once in a while- like once a year, she says its itchy, but not painful, her blisters do look unsightly, glad yours came and went!!!
Lizzy- Sorry to hear about complications... I did my zumba today and thought of you LOL with school i had hardly any time to do it...
I am not sure if anyone else is having wierd weather like us- its crazy... It'd be high 70's low 80's one day then drop to 50 the next 2 days then back up to tshirt and shorts weather then back down to 30s- C-R-A-Z-Y!!!! I dont know if winter is comin or goin! I actually have my heater on right now. Oh and its sprinkling- rain and texas drivers do not mix! Omaz you know what i am talking about- same thing here as in AZ, as soon as it rains a little we have a few fatalities due to bad driving, the oil on the road causes it to be extremely slick when the rain pushes it up and BAM! Accidents galore! I just wish it'd make up its mind!!!
Happy Weekend to ALL!
0 -
Dropped off the car this morning to get an oil change- then took the kids and walked to the library, the grocery store and then back to the auto place, round trip over 2 miles... It was SOOO nice outside. Like maybe 65 very breezy! Loved it
Hope y'all have a wounderful week!!!! Going to visit the in laws and RELAX!
0 -
Good morning, warriors!
It is 2:30AM and just came in from cooling off outside from one of my wonderful hot flashes!
Omaz and Ginger: I had no idea about the chicken pox, that is lies dormant in nerve cells and that (Ginger) chemo and the bc junk has the potential to awaken it. It was all news to me. I had pox when I was young. I am glad it did not come back.
Omaz: hope you are shingles-free for your trip to the Canyon! I bet you are going to do some hiking. I hope you have an active holiday
Texas: nice weather! To think the panhandle is under a blizzard warning! Glad you had a nice walk with the kids. Enjoy the in-laws. It is so odd to read that someone is going to their in-laws with the idea of relaxing! Good for you! As for weather, it has been very mild in CT. It has been upper 40s/low 50s during the day and 30s at night. That is roughly 10+ degrees warmer than usual. Last year we had way too much snow but this year I was hoping to get a little cross country skiing in. I could always head up to VT but last year, and I am sure you remember, I could have gone skiing on my front lawn!
Happy trails to all and to all a good night-
0
