August 2010...anyone starting chemo besides me?!
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Regarding my anxiety at the oncologist's office: The thing that made is so weird is that I have been back to the oncologist's office multiple times since chemo without any weird feelings at all. In fact, I am in the infusion room monthly for B12 shots, every month since I finished chemo in October. I never had a problem before, never was even a little uncomfortable. That is what is so disturbing about this little event. It was like a flashback memory, I could feel the feelings, smell the smells.....and the whole thing came completely out of nowhere! And it occurred the minute I walked into the waiting room, not even in the infusion room. I guess it is like any other "traumatic event", no matter how successful you are at "getting over it" and "moving on", it always resides somewhere in your subconscious and can present itself at any time. Kind of scary to me as I am a control freak, but I guess I am not totally in control of my psyche.
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Lizzy - I know what you mean about it annhilating your deepest fears in one way. It's like the quote goes -- cancer is like beating the Grim Reaper but always looking over your shoulder. But I like to think those shoulders are stronger now should I have to bear this burden again!
Cancer is sort of a curse and a blessing - it does make you count the days and appreciate the good ones. When I'm feeling overwhelmed by "stuff" I think back to those days of surgery or chemo or whatever. I'm coming up on the cancerversery...ugh. I had my mammos in May and was diagnosed in June. It's hard to think back and try to pout myself in that place again - the uncertainty before staging, the scans, etc. That was the worst - the WORST part, and basically being uneducated about this disease we had been thrown into.
Then losing my dad so suddenly once the waters settled, oddly made me much less fearful of death. God worked in so many ways through his passing that I know it was all in His hands and it drove it home for me. His death allowed me to cry - it forced me to cry floods of tears and I needed that. It was something that I had not done since very early in my diagnosis. I think it was part of my emotional healing process, as devastating as it was.Omaz-- that is so interesting about the heart rate - going to look that up!
Well, it's a beautiful day in jersey - have a friend coming over to hang out later and garage sales tomorrow - can't wait!
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Hi Everyone!
Galactogram went well. Very uncomfortable test, but I survived. On first read the doctor said that it looks like my body has created a connection between the ducts in my breast and a seroma that formed after my surgery, thereby creating a drainage system for the seroma. She said she has to review everything closely, but she followed the duct back to the seroma and she didn't see anything else on the way. Good news! I will get the final report from the surgeon next week.
I hope everyone had a good day today. We will be traveling upstate tomorrow to LaGrangeville for a soccer game, should be a beautiful day. Hope everyone has a great weekend. Good night.
Debbi
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Yay Debbi - that sounds good!0
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Good evening chemosabes and radicals:
Still no word from Ladyinbama? I so wish we would hear from her.
The weather here was great today...dreamlike in fact!
Deodorant, nail polish, nail polish remover etc.... is anyone else afraid to use these things now? I am never comfortable putting on deodorant anymore and I also don't want to use nailpolish as all I can think is my nails are porous and that mess is getting into my body. It is weird. I know all about the "healthy" nail polish options etc... but it is just so weird that although there is no distinct connection between deodorant and bc, I feel where there is smoke there is fire so I don't know if I will ever be all that comfortable with deodorant again. I am interested in using nail polish again but just can't seem to bring myself to do so. Anyone else out there with suffering predilections?!
Calamtykel: yes, I do feel like bc made less afraid of death and more aware that we are not here forever. That has been helpful to me as I suffered a setback in business in 05 and wound up in corporate America begrudgingly. I seemed to be afraid to step back out on my own but hiding in corporate confines is not my gig at all and I was miserable. Bc was a knock on the door reminding me that I am not going to be here forever and I should not waste time being miserable and that I need to be true to myself. In that way it has been good.
Have a good time garage sale-ing tomorrow!
Sptmm: glad the galactogram went well. It did sound like it was going to be painful and now I am glad it is over for you.
If any of you have any interest, you should order your medical records in their entirety. I ordered my medical records from Yale and you would not believe the crap I have found in there. For instance, the first onc (moron) wanted to give me TCH which, as we all know, with HER2- people that is nothing but antithetical. Low and behold in my med record my current onc notes that the loser onc wanted to give me TC because I was concerned about toxicity related to adriamyacin!!!!! That is such a total lie and joke....I had no clue about any problems with adriamyacin. Furthermore a copy of that report gets sent to the loser, first onc at no request of mine. There were other lies and inconsistencies. It was money well spent, believe me.
Hair: it is coming in but now I kind of look like a marine! Hair grows more in the summer, right? I am hoping for some nice growth this summer. A few pieces came out in the shower tonight, which is normal, but of course for me it was reminiscent of the first clumps that I lost.
I hope everyone has a nice weekend-
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Hi just a lump update, bs said it was a enlarged LN and he biopsied it . He said to him it didn't look like any cancer and he is pretty sure it will come back neg. Yeah !!! Prayers answered again !!!
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Good news Sue - by the way, you are lookin good in that new picture!
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Oh yes, I have to report a milestone - I had a hair tangle today! You remember, little knots? Yay!
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Hello, ladies...
Thought I'd give you a tornado update because I am also in North Alabama. I started chemo July 2010 and rads in December so occasionally checked those ahead and behind me for info and inspiration, and I noticed you are wondering where your Bama counterpart is. The Huntsville area was hit by six or so tornadoes but the big problem now is that a main electric distribution line from a power plant was destroyed, so they are having to rebuild. Everybody in Huntsville and much of North Alabama has been without power since Wednesday (and few places are open for food or gasoline, and no schools or work, or internet or cable TV). Primitive conditions! I came South to stay with relatives and regain internet and TV privileges. Hopefully Huntsville will be back in civilization next week. -- Charlotte
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Thank you for the update Charlotte! I guess there is a good chance that Lady has no computer, so that's why we haven't heard from her.
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Iowa: Your hair is coming in great!!! Good news on the lymph node. I will keep praying for benign!
Omaz: Yay on the knot!! Its the little things that make us happy now, whoever thought we would be happy about a knot, or a bad hair day!
Cal: Enjoy your garage sales!! Hope you find a couple of treasures (dolls, right?).
Lizzy: I am with you on the chemicals. I have been thinking about getting my nails polished lately, but just can't seem to do it. As for deoderant, I think you are right. I know this is going to sound really gross, but I haven't needed to wear deoderant, as it seems I just don't sweat under my arms anymore, even when I work out. Weird, huh??!! That might change as summer comes, but if it does I am going to the Whole Foods to look for a natural alternative. Today is going to be gorgeous!! I am going to be upstate at a soccer game and I am sooooo looking forward to being out in the sun and warm weather!! Did a funny Zumba dance last night, something about saving a horse and riding a cowboy. Did better on the booty shaking.
Have a great day everyone!
Debbi
Have a great day everyone!
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Thanks for the update Charlotte!0
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Debbi - Galactogram and Zumba - all in the same day - who'd a thought it!0
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Hey so hard! its nice hearin from ya!
Lizzy- Just busy trying ot get life back to normal.I wish i was studying!
I had to drive to san antonio for my herceptin but still no MUGA... they said next week they will get that scheduled. Herceptin went well- no heart racing stuf this time
Also my son had his FIRST play date since my dx- so nearly a year of being cooped up with mom in the house! He got together with another 3 year old boy. He kept saying "my best friend ever!" He was really needing that.
My daughter is doing kickball which is keeping us busy their team is 5-1
About the homeless school issue- i think it is SAD that they want to make a parent PAY for free public school! The homeless problem is pretty big in Phoenix and when we were living htere they actually had a school especially for homeless kids which was nice because they focused on issues that normal schools dont like hygiene (allowing them to brush teeth and shower, wash clothes) Better nutrition (know that sometimes the only food they ate was at school) Sadly for budget reasons they were closing htat school down.
It is a dis-service to our nation to let these children fall through the cracks. They have no control over their circumstances and yet they are paying for it by sub-par education if any and very dim futures. ALL CHILDREN NEED AN EDUCATION IF THEY WANT TO DO ANYTHING IN LIFE. a sad vicious cycle....
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Good news Sue! (btw i tired texting but it keeps coming back invalid) i think i saved the # wrong on my new phone
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Hi all,
Debbi - glad they didn't see anything concerning on the galactogram, so glad it's behind you.
poor Lady, I hope she is okay.
Texas - when I was first out of college I taught special ed - the children were labeled severely emotionally disturbed. My first day of school one of my students (5 yrs old) was suspended for bringing his mother's boyfriends gun on the bus.. Most were abused or born to drug addicts. The sad part was that even the ones that were placed in foster care, the parents got money and then extra money if the kids had special needs and I'd still have to call sometimes demanding they get the kids winter coats or sneakers for gym. I called BCW so many times, even rode in an ambulance with a 9 year old who said he wished he was dead. They let him go home with his mom who was so obviously a crack addict and he wouldn't tell me anything after that. He said 'the last time I told you a secret I got in big trouble' .I still remember over 20 years later. Alot of these kids would come in ravenous and I'm sure for some the free lunches and breakfasts were their only meals, so when they talk about cutting those programs... Although there was abuse of the system too. I quit after three years. I felt like I was just putting a bandaid on the problem and I could tell which kids were headed for jd and prison and could give them someplace safe only 8 hours a day and it haunted me. How do you tell an 8 year old I know your life is terrible but if you can just keep it together for 10 more years... I brought in a cake one day for a little boy and he didn't understand how to blow out the candles - he was 5 years old. Ok, sorry to bring everyone down but it really gets to me how many children in our own country are suffering. I'm amazed now when dh and I both go to my son's IEP meetings and have to fight for services. When I was teaching I think I had one parent show up in 3 years; they just had no interest. It's just an endless cycle of poverty and abuse.
Lizzy and Debbi, I'm nervous about the chemicals but I couldn't stand this grey heatmeiser do anymore so I colored it this morning. I had to laugh, dh said you look pretty and I asked if he noticed anything different. He said did you do something to your eyes? Then I asked the kids how does mommy look different and my 6 yo immediately said your hair. Dh was trying to save face and said well what's diffrent about mommy's hair and Aidan sairight away 'it's brown"
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Good day chemosabes and radicals:
I hope this post finds you all in good spirits!
Charlotte: a world of thanks to you for telling us about Huntsville. It is my most sincere hope that she is fine and that this is just an electrical issue. Lady has been through quite enough this past year and I hope she was spared any loss in those tornadoes. Again thank you so much for letting us know.
Ckptry: Oh no, on the hair I will coloring, I will definitely take my poison! There is no way I am marching around gray and butch-looking (no offense to anyone!) this summer! In fact, the other day I was humoring myself with trying to go like an ashe blonde and then go dark again and just play with it now that it is this short. I was one of those in my youth with no weird hair colors, no tattoos, no piercings...believe it or not my parents *tried like hell* to keep me on the conservative side...poor things! Now that I have this little, short do, I am really considering experimenting. I am so glad you colored. You must feel great....it gets you closer to normal/pre-bc when you look in the mirror and see something that resembles your former self. That is so cute that your dh remarked that perhaps you had done something with your eyes!
Patricia, I can only imagine how frustrating and sad it was working with those kids for years as I did it for just 4 months and it was rough. One summer I was living in my mother's waterfront condo and was a college student. When I was "whining" to my brother one day about my life he told me I needed a wake-up call and that I should volunteer. I called an agency and they set me up to do daycare in a battered women's shelter. I still have pics of all those kids but I had like 15-17 kids per hour, for 2-3 hours straight. One Easter I made 50 Easter baskets out of brown paper bags! They were so very happy! In any case, the building was an old rectory and the area where I did day care was a humongous, wide-open room so one day the maintenance person left an extension ladder in the room, lying down on it's side. Well when you are 2 or 3 years old, that is big even on it's side. Sure enough, I was busy watching 15 kids and the ladder tipped over and one little girl was crying and crying afterwards. I told the administrator and she was flying around to make sure maintenance got that ladder out. Well when her mother got of the meeting she was in, she wanted to FIGHT me over this matter!! I never went back. It is such a travesty but on a very banal level, there is really not much you can do. Also a friend of a fried was raised in a foster home. She used to go to concerts with us etc... and I always felt so bad for her because the stories she would tell us were absolutely hair-raising. I am reminded of Pat Benatar's song "Hell is for Children." It is a travesty. I often times thought if I had a windfall/lotto winning etc.. I would make multi-floor buildings and call them "Girl's Town." One floor would be etiquette, another ballet, another art, another few floors for classes and it would be a self-contained place where they would live, eat, learn, and become polished individuals ready for college. It would, of course, be like one large foster home but the upper floors would all be dorms. So, if I win "Mega Trillions!" I will buy several acres, probably upstate NY, make "Girl's Town" and a farm for handicapped animals. The girls would work with the animals, to develop compassion no-less, and then they would have school and work all on that compound. In long, it would be a boarding school type of setting for the destitute. I feel so bad that girls just roam using their bodies for barter in a society with a human tide that never ceases and with the sickest in society counting on this. It is a terribly expensive agenda but if those mega trillions ever come my way, I am launching this within a year!
It breaks my heart what happens to kids not just here but all over the world. You are correct in that how do you tell an 8 year old to hold on for another 10 years...that is more than another lifetime for that child. It is really sad.
Sptmm: my heart breaks for you as it was supposed to be so beautiful out today and it is barely 60 here and cloudy! I hope you are having a nice day nonetheless.
Nice job on the booty shake! Once you position your feet so that you feel those odd little muscles working in your inner thighs, you are well on your way to a good shake!
On the sweating, I am not an under arm sweat-er(?!) even when working out. I will see how the summer goes also. I am considering baby powder. It is so weird that I find myself questioning the chemicals in nail polish, nail polish remover, reflecting on the bc-deodorant connection rumors and the other day I found myself contemplating the chemical composition of lipsticks/glosses etc... that I have worn for umpteen years and wondering if that lip gloss is really not supposed to be eaten regularly after all!!!! BC dumped me off in a weird place...that is for sure!
Texas: rockin' the play dates!!!!!!!! That is so cool. I am so happy your son feels he has a new best friend! Kick ball...YAY!!! I loved kick ball! Speaking of childhood games, "Dodge Ball" was on the other night and still HYSTERICAL even after I have seen it like 10 times!
Well, in anticipation of this nice weather we were supposed to have today I opened nearly every window in this house and am now getting chilly! Time to start shutting a few!
Good day, girls-
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Hi Everyone, hope you had a great day!
Omaz: Yeah, who woulda thought...quite the combo huh! Galaxies and Zoom....LOL!
Texas: It's nice to hear that things are getting back to normal for you and the kids. Great kickball team, huh!
Ckptry: So, I guess the moral of that story, since your son seems to be on the ball, is that men are not born clueless, it develops over time....LOL.
Lizzy: Yeah, didn't get my warmth, but I did get my sun!! I swear I get really grouchy when it has been gray and cloudy for too long. I think I have seasonal affective disorder....I physically need sunlight to function. It doesn't help that I grew up in sunny Florida and am now stuck up here in the gray Northeast...LOL. But it was a great day anyway. Where I was it was sunny, albeit a little windy and not as warm as I expected. But I was comfortable in just a sweatshirt. And they won!!!
Okay, gotta get some work done. Good night everyone.
Debbi
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Anyone read any of the info about a possible BC outcome and vitamin D. Wed my onco gave me a prescription to start arimidex and they drew blood to check my vitamin d level. Nurse called friday, of course I freaked until I got them on the phone. Said d level was low and to begin 1000mg daily. Nurse said it is related to bone health, I did read that it affects the absorption of calcium. Any thoughts. Libraylil
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Debbi, very good point,lol!
Lill I had seen alot about vitamin d and breast cancer on a topic here, sorry I lost the link when my computer went crazy. I asked my onc about it but she said there aren't studies supporting a link so they don't check levels. I guess it depends on your oncologist. I know alot of people get tested to see how they metabolize tamoxifen, but when I asked my onc about it she said they don't do the test b/c even poor metabolozers benefit more than someone not on it at all. (wish I didn't know that now that I can't take it but hoping for the best anyway:-) Anyway I don't imagine vitamin d can hurt. I just started a multivitamin and calcium this weekend as part of my new resolution to take care of myself. I also started a weekly excercise classat the Y run by a bc survivor who was a personal trainer when she was diagnosed.
A nice sunny but breezy day here, hope everyone has a great day!
Carolyn
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There is a vitamin D and breast cancer reduction evidence. Unfortunately I'm on and off the D - my nutritionist follows the Marshall Protocol, which calls for lowering the levels of D in the body until the lyme is licked. Right now I'm back on the lyme supplements since I got bit -since my symptoms are nearly all gone now, hopefully I will begin the D again.
Really the best and most natural way for D3 is simply the sun. Even 10 minutes a day is beneficial. Full body sun, or as full body as you can get
is best. Mercola's site has a lot about D deficiency. 0 -
oh my gosh-----I was liking that menopause thing that I thought I was in. Maybe I'd better rethink the remove the ovaries thing. I was so much happier when I was in "chemopause". Now I'm about to get my period - feel like the cramps from h#ll, so bloated I could blow out a wall and I'm supposed to chaperone a group of teenagers to a scavenger hunt for 12 hours in NYC on Saturday. This had better come and be done by then!
UGH!
ANybody else have trouble w/ their first period after chemo? I haven't had one since August.
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From what the onco said I was under the impression they would need to monitor vitamin d levels with arimidex. Reading online I saw that D assists the body in asorbing calcium.
CKPTRY hmm so you visited Lady Clairol also? Mine is so grey I went with a dark ashe blonde to blend in with the gray roots. May stay that way. I'm enjoying the el blonde look for a while.
libraylil
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Hey Lizzy - I was just wondering if you wound was doing ok. Is it?0
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Lil I think that the estrogen suppression can contribute to bone loss, so the vitamin D is recommended to help combat that. My endocrinologist was concerned about that when I was taking the Lupron injections during chemo so she checked my vit D levels and recommended a supplement. In general I think it is not a bad idea for women to take vit D and calcium to help keep our bones strong! But Cal has a good point that getting outside and enjoying some sunshine is a great way to get vit D!
I hope everyone had a good weekend! I had rads #26 today - the last of my "regular" ones and tomorrow I start the boosts - so only 8 to go!
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jsw - Yay for finishing the last of reg rads - boosts are quick!0
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I am starting T/C chemo on thursday. I am real worried about this. I have already done 4 rounds of A/C. That went okay. I spent a week in Chapel hill hospital, when my WBC crashed. Have severe bone pain in left leg ( Took 12 Doc's to figure out I have Shingles. The pain my never go away.) That came after my second round of A/C.) They said that is rare to happen. What can I expect when it comes to T/C?
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Hi Schie2011 - Is the T taxotere and the C cytoxan? There are a couple different T's anc C's. I have taxotere and carboplatin, some women have taxol and cytoxan. Regardless the T is usually for a taxane and you may do just fine. They often give steroids for taxotere to minimize swelling but if you are having 4 rounds of TC you might not be as at risk. Do you know if you are doing taxol or taxotere?0
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It is the Taxol and Cytoxan, 4 rounds every other week
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schie2011 - So you have been through 4 rounds of AC and now 4 of Taxol/Cytoxan. I think someone will come and tell you about their experience with taxol. I iced my fingers and toes for the taxotere, I don't know if this is indicated for taxol. Best wishes to you!0
