August 2010...anyone starting chemo besides me?!
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Shiramg- The only advice I could give is that personally, my visions of what chemo was going to be were much worse than it actually is. I have had 3 TC so far, one more to go, and the side effects have been minimal and very manageable.
As for getting sick, I would eat as healthy as you can, use hand sanitizer religiously, and stay away from enclosed areas with lots of people as much as possible. If you limit your exposure to sick people, hopefully you won't get sick. And personally, I believe the more fresh air and sunshine you get, the healthier you stay. Hopefully it will be a nice fall!
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OK I just changed my avatar to my buzzcut picture. I kind of like it but still afraid to go "topless" outside the house, though I did take off my hat and show a couple of my co-workers today.
wherria Good for you taking Marlow for a walk every day! It is good exercise for you and a great chance to spend some special time with him. I hope that in time he will start feeling better and you too!
Lizzy That is a bummer that your LGFB class was cancelled but I guess a good thing in the end since you would have been so late! Hopefully you are able to reschedule because it is fun and like sptmm62 said it is good to know how to properly draw on eyebrows!
Zachsmom Sounds to me like all of those things you are doing are good things! Good for you!
I wanted to share a cute thing that my aunt did for me today. My mom has 3 sisters (my aunts) and 2 of them are BC survivors and also their mom (my grandmother) is a BC survivor. Well this year is 10 years of survivorship for one of my aunts so she is having a big party and also doing a Komen walk with my mom, my other 2 aunts, my grandmother, and my sister. This is all happening in Phoenix, AZ so I'm not going, I didn't really want to travel so far in the middle of chemo. But she emailed me today that she has registered me for the Komen "Sleep In for the Cure"! It is a real thing, basically it is a way for people to participate and fundraise if they are not able to be at the walk itself. It makes me smile though that on the day my family will be walking I will get to do my part by sleeping in!
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Not at all caught up with your busy day ladies! But just an across this, idk if it can help anyone.
http://www.genetichealth.com/Resources_Personalized_Medicine.shtml
Have not gotten all through the site but looks legit so far
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I love the sleep for the cure JSW...sleep well!!
My kids and I will be doing the Walk for the Cure at Jones Beach here in NY on October 17. I will be celebrating the end of my chemo. I figure I will be two weeks from my last treatment so I should be okay. I have heard they are very uplifting!
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ONEMONGA - I was feeling weepy today too. Maybe cuz i woke up with a headache and had nausea all day. I don't know why but I resisit taking ativan and compazine until it becomes really apparent that I need it! I'm gonna work on that. Didn't sleep well last night either but worked in a couple naps this PM! I am feeling better now and focusing on not getting sick. Saw onc today and i have neutropenia but I had to go to the grocery store and DH and i always eat out when we go to "the city" for treatment. Next week is my last AC tx and onc says that taxol will not be as "bad" I'll believe it when i experience it because we all know SE's are different for everyone! I found out i was eligible to get a few vouchers for free alternative treatments. i picked up a brochure on acupuncture and have decided to try it. I seem to have constant pain in my neck and shoulders ( had b4 bc). I just don't want needles in my arms as i don't want lymphedema - anyone know how/if they can get around this?. I don't think i'll be able to draw on eyebrows. Mine are hanging in there but think i'll order the glue on ones just in case.
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My Dear Doc just called to tell me that my tests showed much improvement in my liver enzyme levels and that my chemo would start up again next week sometime. He thinks the hi levels were caused by the Cipro {I could of told him that] oh yeah, I think I did. He told me they would be very conservative and start slowly and that overall treatment would take 2 additional weeks, which looks like around Nov. 11. Thank you all for being so supportive and responsive to my minor plight. It's kind of funny how the sisters who haven't started are very fearful, as we all were, and those of us who have begun the process just want to continue and get the f-ing thing over with. I will have a good weekend with no wine but lots of whine. By the way the stubble under my pink bandana is totally white, like Barbara Bush white. Where's my color, my high-lights, oh they're in the trash. At least I'm saving a bundle on not going to the salon once a month. Good night Chickies
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Good going onemonga!
Agree with you, once our feet are on the path, we continue the journey, if I may paraphrase, neither rain, nor snow, nor SEs, nor difficult families/frenimies/coworkers will keep us from our appointments.
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https://familyhistory.hhs.gov/fhh-web/home.action
Here is another family health history collection site. No danger warning on this one, though the other had better articles I thought.
On the LE, my understanding was that the sleeve should be worn anytime you would change pressure--flying, submarine, scuba diving. Possible at the begining of any new excercizing, any time there was a trauma to the arm (spider bite, cut, burn), or if you just had kind of a swelling feeling. There is also a special massage, which they can do at the PT, or you can learn to do for yourself that helps the drainage.
Shirmag, I am with Sptmm, have had the same 3 treatments also. Only one point of dsagreement: we use the hand sanitizer in the car, soap at home, especially since I heard about c. dif. (not killed by sanitizer.)
And hey, there are positives! Fun make up class, with a few hundred dollars of free make up. Possibility of not needing to shave for a while. Lots of $ saved on hair products, and maybe bras. Finding out who are really your friends, and who is just some one you know. Really understanding what and who is important to you in your life, and having hours in the chemo chair to really think it thru. I confess, my glass is more than half full. Always.
Even when I am up at 2am with my steroids......
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Okay ladies, it's 3:56am here and the decadron is doing it''s dastardly work....I"M UP! I feel like it's two o'clock in the afternoon.
JSW you look fantastic, and you know what it'll get easier. For the first couple of weeks I became kind of hermit like, I was really afraid that people would stare and I'd be super embarrassed. But i've come to realize that people don't actually stare (especially when I'm wearing my ball cap) and I started, at some point, to feel really normal about the whole thing. It's amazing what the brain can convince you of. So just give yourself some time.
On being outed by children/grandchildren- nothing more mortiffying in the world. I am usually a very 0n-my feet-kind-of woman but when my four year Max outed me to a room full of women at the dentist's office I drew a blank. Horrifed, sweaty, unsure of what to say- it was a low point. And I wanted to bawl Max out but I knew that it was just his way of coping with things, so didn't.
TX #3 tomorrow. Am super excited. I love these things because it makes me feel closer to the end. I'm the one entering the cancer centre humming and smiling and trying on all the hats. Can't stand the Neulasta hell for the week after but I'm trying to put that out of my mind.
On doing cancer with other responsibilities- kids, grandkids, volunteering, working, singing in a play!!, coaching soccer, walking dogs, WORKING did I mention that one??? Cuz I'm not right now and I'm in awe of you that are....we're all plugging along through it. That's why this board rocks. You can complain without fear re husbands who do all the wrong jobs with all the right intentions, children who out your baldness, perky cosmeticians, ass-hat drivers and parking lots, BFFs who drop the ball and doctors that seem as if passing any medical exam may have been some sort of miracle.
LIsabytheshore- I confess, my glass is half full too. I was just saying to my mom, who is here for my tx, "Mom there is quite a bit of time where cancer is really peaceful, I sit, I read, people shower me with care, I say no to the stuff i don't want to do. The good outweighs the bad by a long shot sometimes."
Onemonga- that's the spirit, girlfriend. Really glad you got good news.:)
I hope you're all having full sleeps not interupted by decadron. I'm off to read a boring novel. The biggest of hugs to each and every one of you.
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Hey Sweeney, looks like just me and you this night........
I did say 'no' to a couple of camping trips, and did not jump into one sport booster club this year (though I will go to the meeting this Tues. Sigh.) Am working, have no grandkids. I have 1 in college, 2 in high school, much easier than all you folks with the young ones. just can't imagine.
I don't know if it is harder to explain to the younger ones who can't really understand, or the older ones who really can. The boys (includes the ones that I did not actually birth but are always here) seem to really getcomfort from wearing 'I love boobie/breast bracelets and shirts'. And I supose they do. lol.
This group seems to have quite a few young children. Is our group younger than the average or just slightly older parents? Maybe Lizzy can update the spreadsheet! Also been thinking our group is a bit larger because of summer vaca. Those the drs all took I mean. Not ours, although may also have played a part. Comments? Or maybe no one else cares
. Confess to liking a few statistics....... Adding a few drops to my glass.....I don't have cancer anymore. I had it removed. Just one chemo to go. A few more drops.
Good day to all!
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GOOD VERY EARLY MORNING CHEMOSABES!
The deca/dexa train: I am here as well...up since 3! Keep hoping this is not real but anything is better than that "other" thing so I will take some sleepless nights! I keep watching cat furniture commercials and some syfy stuff (not my fav!) and that is it. I received the messages from you two but was rather hoping I might go back to sleep...and almost 3 hours later....
Lisaattheshore: on updating the list with ages and kids/grandkids, I feel that is information people need to share either in their signature, at the beginning of the post etc.. Unless there is a referendum of sorts, I think it is something each person has to decide upon and perhaps they will let me know. For now Ieave it up to the posters to tell me what the next move on that one would be!
To all: did any of you have deca/dexa breathing issues? It just seems about 3 hours after I take it, for the past 2 nights, I get like a nervous breathing type of thing around 10PM. I took a xanax last night and that seemed to help. I don't know if I am just a little nervous about all of this and I am exacerbating a somewhat, would-be, latent condition? I will talk to my doctor's office tomorrow but just wondering what arm-chair analysis has to say about this type of SE and if my mind is manufacturing it!!!!!!
Ok....I am going to go try to watch the inside of my eyelids now!!!!
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I have an appointment at nine, so no sense in going back to bed. I can take a nap later or go to bed early tonight.
Lizzy, not sure if chest tightnes is a SE of the dexa, have not run across that one. Also agree I would not want anyone to feel uncomfortable sharing information. Just that rampant curiousity! Why so many this time, why so young.......Also don't see fields for adding that into the signature. Ok, just put it down to early morning/late night rambling.......Certainly did not think it would be appropriate to comb thru all the posts to gather the info! No intention of starting a data mining project! So hope no one is offended.
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I have an appointment at nine, so no sense in going back to bed. I can take a nap later or go to bed early tonight.
Lizzy, not sure if chest tightnes is a SE of the dexa, have not run across that one. Also agree I would not want anyone to feel uncomfortable sharing information. Just that rampant curiousity! Why so many this time, why so young.......Also don't see fields for adding that into the signature. Ok, just put it down to early morning/late night rambling.......Certainly did not think it would be appropriate to comb thru all the posts to gather the info! No intention of starting a data mining project! So hope no one is offended.
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Lisaattheshore: I *totally* understand early morning ruminations as I watch my cat furniture infomercials! I just project my own insecurities in matters like this as having lived in a stalking situation in NYC, I sort of live like I am in witness protection...not joking. We are a nice group here but this information can be viewed by so many and, as I also live only 15 minutes from the awful CT home invasion where a father lost his wife and 2 children, I am just more concerned these days. In addition, and unbenknownst to you all, I myself had an attempted home invasion this past month. Thankfully I am smart enough to have avoided it but they were clever, albeit seemingly juvenile, but an attempt nonetheless. I don't think your idea was offensive at all. It would be a lovely idea if the world was a slightly more sane place! I just prefer to err on the side of caution. To each their own, however, and if the members want to disclose more, I will be happy to collect that information from thread postings going forward but it would have to be in the thread, not in a pm.
I also just realized I took DOUBLE the amount of deca I was supposed to last night which may be why it is now 7AM and sleep is very, very elusive! And now for my counting sheep trick..!
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Happy Friday Ladies!
Not feeling very well this morning. I'll spare you the details, but suffice it to say, I don't think I'll be wandering far from home today for a variety of reasons! (Except maybe to walk Marlow.) Yes, it is a Godsend that we have Marlow. We always have more than one dog so they can keep each other company. Since Marlow is having so much trouble since Bixby's death, we're probably looking at getting a new puppy sooner than we might otherwise. Dogs can get really, legitimately depressed, and I don't want this to scar him. When Bixby was younger, we had two other dogs (this was before Marlow), and one of them, Juju, was his best friend in the world. They were completely attached to each other. Well, Juju died young, and Bixby became extremely depressed, so much so that his whole personality changed. He was never the same dog after that, became much more withdrawn, less playful. Not sulky or ill-tempered, but not ever as happy as he was when he had his friend. We don't want that to happen to Marlow. (Thanks for letting me talk about my dog problems here. I know they aren't cancer-related, but they're very much a part of my reality right now.)
shiramg: I too am very thin, and it is worrisome sometimes, and makes some things harder. For instance my bs told me I would not be a good candidate for a port because I have no fatty tissue up there, and the port would probably be pretty painful. My onc told me at the beginning of chemo that if she saw any weight loss, she would suspend tx, but that hasn't been an issue. Instead I've gained a little weight. As for advice: first I would ask if your onc's practice/center has a nutritionist on staff that can help you plan out meals that would maximize nutrients and calories (I meet with one between each Tx) ; drink Boost or Ensure High Protein drinks (protein is a high priority during chemo -- you'll need more of it than usual; and like someone else said, carry hand sanitizer everywhere you go, and I would add, get used to things like using your elbows or sleeves to open doors, not touching things like the railings on escalators, you know, common sense stuff like that. It's not much, but hope it helps.
Adey: Have you had the Chicken Pox, because if you've had them, you cannot catch Shingles. It is the same virus, and once you've had chicken pox, the virus stays in you, just lying dormant. People develop shingles when for whatever reason (illness, trauma, stress, etc.) their immune systems are weakened and can't keep the virus dormant, so it becomes active again (that's why it's such a common occurrence among cancer patients). But if you've had chicken pox, you already have the virus anyway. Now, if you haven't had the chicken pox, then you can catch them from someone with shingles (although I've heard only if you come into contact with the liquid inside the blisters, but not certain about that). And let me tell you, if you didn't have chicken pox as a child, you DO NOT want them as an adult. Chicken pox hits adults much harder than children and can be quite dangerous. There, that is my two cents on shingles!
Jsw: You look absolutely adorable!!
Onemonga: Congratulations on your labs having improved. Glad you're getting the go-ahead.
Sending big virtual hugs to all of you!
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sweeney I was outed too - my husband was shocked but I was so sure it was going to happen it was one of the reasons I was hesitant about wearing a wig out with the kids, too tempting for them:-) I was holding Caitlin, my 3yo so my hands were full and she said to the neighbor 'want to see mommy's hair' and whipped my baseball cap off. I didn't expect to be as embarrassed as I was, I just started babbling some funny story for the neighbor's sake and tried to pick the cap up as quickly as I could. I cried when I got home; I don't know why it feels so different b/c you can see I'm bald with the hat.
I get chemo today too so I start steroids today. I'm hoping to use the high to clean the house and then dh and I have an actual date tomorrow night (he goes with me to chemo but it's just not the same;-) I feel guilty complaining about this, but it's my third chemo and my mom has yet to come out and help with the kids. My 76 yo dad has been here every time; the first time I was worried he couldn't manage; my 5 yo can outsmart anyone but now that they're back in school it's fine. (eg Dad "I don't know why you let them jump off that chair" Me "Um, I don't" Dad "Oh, well he said you did, that he does it for PT"( lol) She went to atlantic city last time instead. I know she'll never be a warm fuzzy mom but it's days like this I could use one. Ok, whine over, feel better getting that off my breast;-).
Hope everyone has a good SE free day.
Carolyn
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Okay, Ladies, I don't know what is is with me, chemo brain, and panties, but here's another one for the books (after, if you remember my last instance when I discovered in the middle of the day that I was wearing three pair of panties!). This morning, getting ready for my shower, I discovered that all day yesterday I had been wearing my panties inside out! Think there's something Freudian going on here???
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Changed my Avatar to show you a picture of Marlow.
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3 days post treatment and just tired and naseous today, otherwise ok. JSW, looking good girl. On being "outed" : I've only been bald 2 days, but I have this fear of my hat flying off my head, so the couple of times I've gone out, I'm wearing a thing called a "cool cap" or "dome hat" which fits tight to the head (sort of like a yarmalke SP? the Jewish head thingys), then a headband then a cap. I figure all three of them can't come off! The headband hides the edges so it's not quite so obvious you are bald. I got them from the tLC site; they were a little pricey, but I like the way they look.
Lisa: I like stats too, I'm always looking for connections, reasons for things. Anyway, just for you: I'm 53, no biological children but 4 step kids (2 from each marriage; my first husband died 8 years ago and I'm remarried 11 mos. ago). Not working, was looking for a job when C hit.
And on my glass being full/empty: Yesterday I was out driving and rolled the window all the way down and didn't worry about my hair getting blown or frizzing up in the Alabama humidity. Nice! I could get used to this bald thing.
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hello gals i am reporting live from chemo. i am using my phone and for some odd reason it is not letting me capitalize anything or use any special characters. anyway, my onc prescribed compazine to add to my emend and zofran to help with the nausea. last time i also had no appetite for a few days so he offered some kind of marijuana derivative medicine but said it would make me high and i would not be able to work. so i decided against it this time but if i have a hard time i might try it next time.
thanks gals for the compliments on my buzz cut. i posted the picture on my caringbridge website last night too and got so many nice comments from my family and friends. it made me feel a lot better. and today at chemo i have been getting compliments on my hand knitted hat.
wherria that picture of marlow is so cute. you are being such a good mom to him and i think it is just as important to talk about the non cancer stressors as it is to talk about the cancer stressors. lisaatthe shore it does seem like we might be a younger than average group or perhaps it is just more younger gals who are posting.
ok i am tired of the phone keyboard so i will check back later.
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Well, day 29 of chemo, with only 13 days left, I am joining almost all you'all with a 1 inch long buzz cut! (is that the correct useage Lady in Bama?
) I think this was called a 'teddy bear' in the early '80s. Let the kids do it, so it's not quite even. Hate the wig I picked out weeks ago. Gonna take that back!My diagnosis was in July, I was 43 (bday since). Had all the kids in my 20's, nursed them all. My risk factors-overweight and drinker (just a little of each!) , so raised my odds from 1% to 1.2 %.
Hope everyone is ok, or better.........
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lisaattheshore: Okay. Y'all is a contraction of you and all, so the apostrophe stands in for the letters "ou" of you. Y'all. Now, good use of "all y'all." That's good southern speak!
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A couple of things I didn't want to hear today. "You look so cute bald, it makes you look much younger". As if I would be bald just to look younger, maybe? The Doctor wants you to come in Mon. for a blood draw with your own personal VAMPIRE. My very pricey port is only going to be used 4 times as my draws are done in a vein. "Well now you can go out this weekend and do anything you want" without alcohol? OK, done whining, almost forgot to put on my PEACE cap on this morning when taking DH to Metro Station, Good Lord, am I getting too comfy with this bald thing? Actually not bald, a very short buzz cut with stubble and some smooth spots, very attractive. I hope all of us have a peaceful weekend and that some or most of you love football as much as I do because it sure makes you forget for awhile that you had cancer and that life can be normal again.
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onemonga- Sometimes we all need a little wine, I mean whine! I'm saying farewell to alcohol this weekend as I start chemo on Monday. BTW, I've had blood draws from my port. I don't understand why they can't do that for you. I think you need a "power port" for contrast tho'. Enjoy the games.
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onemonga - I have blood drawn from my port (power port), it is much easier.
Numb toes - anyone else with numb toes/bottom of feet?
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GOOD EVENING CHEMOSABES!!!
Did 5 loads of laundry and lifted weights...SE's are not to be found so far...stay away!!!! I did, however, test my muscles today and there is obvious tiredness in my bi's and tri's but that is b/c post-bmx I had to stop lifting. Oh well...this too shall pass!
Adey: goodbye to booze! Sad! Such a sad day!
JSW: How did you do today? Hope you are feeling ok. Great avatar!
Onemonga: weren't you the one who said something about emla cream and how they don't want to use it because it my burn your skin? I asked my nurses at Yale and they encourage us to use emla, actually demand it, so we don't have pain during access. In any case, YEAH for football! Plus Yankees are finishing up...it all helps to focus on something else for a while!
Wherria: *that* is Marlow?! Bixby's twin!!!!! What a beautiful dog!
Ok, so the roids are done and I am hopeful for sleep tonight.
Have a good night and remind yourselves it could be worse...like we could live in Kabul and still be in this predicament!!!!!
Your FEARLESS Leader!
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hi, thank you for your reply, my computer was messed so i couldnt get on lately,
well i am waiting for an answer from canada pension disability, ( i was told that most cancer patients dont get approved unless they are terminal) you can wait up to 4 months for an answer.
i just had another chemo treatment and my head is killing me and nauseous, i told them at the clinic and they said i might have to up my anti nausea drugs.
i also checked out at the cancer society( i was told they have an emergency fund up to 500 dollars one time for bills,)
i am fortunate to have a great family and friends, they are putting on a social in honour of me next month to help me and my children out.
thank you again, sue
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Hi guys,
I have agreat new chemo side effect, I woke up yesterday looking like I'd been crying all night, swollen pink lids and watery eyes, though they feel very dry and itchy. They started itching alot this week and I was a little worried going for my tx today that it was pink eye and I'd have to ditch all my LGFB makeup! The nurse said it was from thinning lashes but the doc said it was the chemo and to use some lubricating drops.
poor dh, after my first cycle he said he was amazed at how I was sailing through it and I was in the ER soon after getting fluids ; this week he said I looked great bald and still had my beautiful eyes. I asked him to hold the compliments for a while:-) Anyway, am so happy those of you shared your buzzed pics and will try to get dh to take a picture before something new happens to change my appearance. (PS puffy eyes and pink runny nose are chemo related, I am actually on a happy steroid, 5 antiemetic med high!)
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Onemonga: I'm so glad it's college football season, I love it and you're right, it takes my mind off things. War Eagle! (that's the Auburn University yell for those who don't follow college ball).
Carolyn: Are you doing Taxotere? I have a friend who had the eye problem with that drug. She said it should be called "taxo-tear".
I have a great new SE too: ACNE. My face looks like I'm 14 again. I talked to the nurse today and she just said yes, it was a chemo SE and use antibacterial soap. Yes, I know. I've already been through puberty and acne once!!
I hope ya'll don't think I was being a smart ass about how to use this word. I was just picking on Sweeney 'cause she's Canadian; and because she seems to have a really good sense of humor and I thought she'd "get it."
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I love the fact that I'm getting personal with y'all. In fact I used y'all with my kids today. "Y'all eat that now or I'm gonna have to smack you with my shoe." They looked at me like I was on something and tore up into fits of laughter. It was great. So Ladyinbama you not only taught me something but you made my kids laugh too.:) Awesomeness all round. And I most DEFINITELY got the the joke.:)
I"m not so much into college ball but I am super anxious for HOCKEY SEASON!!! Go Sens Go!
Had my third infusion this morning. Feel fine now. Just waiting for Neulasta hell week which starts Sunday, then not-so-much-fun. Am going to surf the web and try and forget about cancer for awhile. Crop circles have always interested me, so I think I"ll go learn about that tonight.
Take care, eh?
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