For those starting chemo in June
Comments
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NL, Hope everything works out and you get everything straightened out. The medical red tape can be maddening sometimes.
Good morning Beautiful Mary (and I am not being facetitious as Richard Dawson was fond of saying on Family Feud). Did your friend do lasers to look better or to alleviate lymphedema? They are trying it in Europe to help the fluid situation in LE. Looking better wouldn't hurt if it were a side option. This is going to sound foolish (but that never stopped me before), and I may have already said it (brain fart), but it seems to me that they could remove lymph nodes from one part of the body and put them in our arms to replace the ones that are missing?!?!
Hey PJ
I finished a 20 page report yesterday and start on a proposal for a presentation today. My long weekend is shot but hopefully I will get to leave on time Thursday, our last day.
Have a good, safe memorial day ladies. -
Janie, my friend is trying to look better. She is single and sells realestate and feels she needs to look younger. I don't worry too much about my wrinkles but years of smoking has given me the gooses a*# mouth. I also have no lips and I can't draw them on because the lipstick runs in the gooses a*# wrinkles and then I look like my mouth is tye dyed. I just want a little less A#* face and a little lip. I will have to check out the transplant of lymph nodes. Janie, as one can see from the pic of P.J. and me beauty is not my friend. I have more of a manly look. When my hair was gone and I wore my ball hat, Sir was a common name for me. Have a great day girls. Mary
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http://www.lymphedemapeople.com/thesite/lymphedema_laser_treatment_saras_experience.htm
I found several references like the one above that tells about laser treatment in Austrailia, especially. Those who have done it seem to swear by it. Wonder why nobody over here seems to do it. Bet it has something to do with insurance not wanting to cover it. Although over there, it appears not to be all that expensive. Hey, anyone want go to the outback? Let's take a cruise! -
http://www.uams.edu/today/2003/030603/lymphedema.htm
I wrote the professor involved in the above research at the university in Arkansas but the email came back. He must not be there any longer. Would love to know how it turned out. -
Hey Janie!!! I get treated at UAMS! We've got a great research center. I am actually getting to participate in a clinical trial for a drug, Avistan, that is approved for lung and colon cancer. It's in addition to my ACx4 and Taxol x4. After that, I have my mastectomy then 9 more rounds of Avistan (it's aimed to prevent recurrence). I'm exited because it looks very promising. I'm lucky we have such a great facility.
I started chemo 13 days ago month and started losing my hair today. That doc is not my doc, but I can go over and pick up anything at UAMS for you and send it your way, just let me know. I'm going there tomorrow to pee in a cup and I go back on June 6 for tx #2.
Good luck!
kathy -
Kathy, 13 days was all the longer my hair managed to hang in there too!! That was back in 2004--good luck with your treatments and "good for you" for joining a clinical trial--I've been reading about Avistan--sounds promising for the ER/PR+ ladies. NancyLee
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Hi My Junies!! My mom came thru the biopsy well but they did put her to sleep so she's a bit dopey. Now they took her down for a CT scan of her pelvis. She is really sleepy so they kicked me out and told me to come back later this afternoon. I'm usually on the other side of these things so sitting in a waiting room and then visiting her in recovery was new for me. Now I have even more empathy for my sister and best friend who have been taking care of me for the past 3 years in all these hospital dramas. My poor mom--the nurse says to me--"too bad she can't talk" and I laughed. I told them that she talks just fine--she's just mad--I can tell by the look on her face. Well, gonna take my nephew and SIL out for breakfast. Life is Good Smiles NancyLee
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Hey, girls, long time no see... This not having a computer at home is a real drag. Seems I missed alot. Mary's getting new body parts. Janie's working her butt off and doing medical research on the side and Nancy Lee is having to travel all over. NL, hope your mom does great and gets good results.
Janie, I'm with you on the cruise for the lymphedema laser. In fact, it'd be nice if they'd just combine it.
Mary, if you're getting a new shoulder, can they just replace other parts with, like, a volume discount? How're the knees?
Not much up here. Mom is now at about 2 weeks with lousy plumbing (of the pipe kind). They'll have to dig up her yard, but won't do it til it stops raining. And it hasn't for a week so far.
Other than that, good. Taking Nathan to a YuGiOh tourney Saturday after my lymphedema thing. Maybe they'll give him sympathy points when they see my mummy arm.
Soggily yours,
Paula -
N.L. my grandma(that raised me for a good few years) had Alz. and she would do the same thing. When she got mad she'd purse those lips and not talk until she forgot she was mad, or that she could talk. She would crack me up sometimes and make me cry sometimes and make me do both at the same time sometimes. N.L.I hope everything goes good for her and you. P.J. Great to hear from you girlfriend!!!! I hope the pipe guy gets Mom's plumbing running smooth. HMMMMM, I'm not going there cause I don't want Mom mad at me.... I have good knees but I could use a good lipo on the hippo area and the buttox. Yea, I call it the hippo area cause, well, only a hippo could have these thighs. I have my fathers thighs! Apparently I got his looks since I was called sir when I was bald. Janie, hey maybe you can get some info on that now. I hope you girls get something that helps. I just really feel sorry for ya. I had pre school graduation tonight then we went and ate. Gosh, I just love those grandkids to death. I really want to be around for the youngest ones kids when she ever has them. Grandkids are so much more enjoyable because well, there not "my responsiblity" 24/7. You get the happy times and get to send them home when your done with them. Ya know my youngest always came into the bathroom while I showered or what ever I was doing. She talked a lot and frankly I never got time to myself when my kids were young. If there is a God; I pray she gets a girl child just like herself. I know the "Mothers Curse" works cause my son got a little boy that looks just like him and acts a lot like him. Well the grandson is a much nicer child but the blueprint is there. The middle daughter, well she has 2 boys and no more hope for a girl child so it didn't work on her, Darn! I better get going. Glad all is well with my girls. Good night, Mary
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Well hubby has a Dr. apt. in Springfield today which is convenient since we also have to get a new door knob for the front door. Yea, it didn't open for hubby(unlock), sometimes you have to giggle the key, well hubby took the knob off to see what was up, after he pried the door open and we have to get a new door knob today while in Spring. On the bright side we don't have to get a new door(not yet anyway, he hasn't tried to put the new knob on yet). We couldn't get out the door this a.m. because the inside knob was still on so I guess somehow the thing locked and we couldn't get it open so we had to use the back door. Hubby was glad we didn't have a fire and girls I am too because he said we wouldn't have gotten out. First theres the back door whick is closest to our bedroom and there are windows and lots of them in our bedroom and hall. Oh my; he would die in a fire because he wouldn't know where to go. Maybe we need to do a demonstration on stop drop and roll like 10 ft. to the side door to get out! There is a door just outside our bedroom. Where is his mind? He would be wondering around in the smoke looking for the front door. Why? I better go put some money in the checking, this could get costly. Hugs, Mary
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Marigold--a MUGA is a test they do to see how well the left ventricle is pumping blood out of the heart. They inject you with some radioactive stuff and you wait 15 minutes, then they scan your heart (this takes a few minutes and it's reminiscent of an MRI but not as confining). Normal ranges are 50% to 80% and I was at 75%. This is an important test because some chemos are very hard on the heart, so knowing the functioning level will help your onc decide which chemo to give you. Good luck!
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I asked my doc about drinking and chemo and he told me to not drink alcohol for the 4 or 5 days after treatment, but otherwise a glass of wince or drink was ok every now and again. I'd be curious as to what other docs have said on the issue, so let us know if you discussed that with your onc.
Finally, you recall I started losing my hair Memorial Day (Day 13 after tx1). I got it cut the next day. And today you can see it's REALLY thinning on the forehead and at the crown. I have super thick hair so other than that, you'd never know I'd lost a hair. But, with the thinning, I may go ahead and shave it this weekend. I'm going to Dallas (I live in Little Rock) to see a friend tonight and go shopping and I have a dinner date with my boyfriend tomorrow night when I get back. I don't mind shopping in Dallas with a bald spot, but going out where I might run into someone I know with a couple of bald spots is a different story. I rather wear a scarf to dinner. I'm taking a scarf and ball cap to Dallas just in case I need it. UGH! It's not as traumatic as I thought (maybe b/c I lost it when I was 15 with the radiation for Hodgkin's--now THAT was traumatic)...but I still don't like it!
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Hey Ladies, I'm Home!
Finished my research proposal just under the deadline wire and am officially finished at school. Unofficially, I have to venture back over for a day next week.
Kathy, Thanks for the offer of the info. Dr. Zharov did email me back after all. My computer said his email had been returned, so I was surprised to receive an email from him the following day. He said he would let me know the next time they have a clinical trial.
Well ladies, I have or will have two day sleeves, two day gloves, a night sleeve and a flex e touch machine (coming Monday UPS). I was told the insurance would pay 90%. Guess what. They say I have to count it as out of network and only pay 60% ?????? and my part is $2800!!!! Does this never end?
PJ, I am ready for the cruise pronto!
Hi NL. Mary, Any more medical news? How's the shoulder?
Have a great weekend ladies. My baby turns 27 tomorrow. Yes, I am old. -
Glad your done for a while Janie. Now you can relax a little until you decide what to do with yourself through the summer. I seem to have a hard time standing still for very long. I always wished I could stop working and now I just can't stay still, I have to be doing something all the time. Have a good Sat. girls. Mary
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Does anyone know the price of a new truck door? Hubby is fixing the neighbors for him(his power window appears to be stuck and it is raining). I just looked out the door and saw the freightening sight. I better go to the bank again. Later, Mary
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HI girls, talking to you from my brand new imac. very cool. if any of you had a mac, we could video chat, i think. but after looking at myself on the camera, it'd probably be a very bad idea. oy, i look awful.
well, i skipped out on my lymphedema treatment yesterday because my bro was in town. i should go today, but..... maybe wednesday....
mom's still up to her ears in plumbing problems. poor thing. i'm about to go over there and see what's up.
hope you guys are having a great one. mary, hope your dh didn't bankrupt you..... -
Hey J.P. glad your back up and running. We have had grandkids yesterday and today. We played ball with them and boy, we shouldn't have. I have a Dell so I am outta luck but you do not look bad at all! You are very pretty. Janie, hope your wk. was great and I think it was. N.L. I hope all is well on you end. I need to get a few things done around here. Later, Mary
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PJ. Yeah, someone asked me to get webcam on yahoo and I said heaven forbid that people could see me sitting here like this. Is your LE clinic open on the weekend? One therapist sometimes comes in for a while on Saturday at mine, but it is closed on Sunday. I cancelled my last TX because I was covered up at work. I have one tomorrow at 1:00. My night sleeve is not snug enough in the hands and fingers so they told me to wrap a bandage around it. I found that wearing a fingerless isotoner glove works better.
Just got back from Traci's choice for her birthday meal. It is many miles away and far too much food consumption....but oh so good.
Hey Mary! House still standing?
NL how is your mother's situation and how do you feel?
Kathy, doing ok during chemo? The hair WILL come back.
Later,
Janie -
I'm at my sister's place in Oregon. We walked in the Sara Fisher Breast Cancer Foundation's Heaven Can Wait event this morning. It was a lovely day here. I walked in the 5K with my sister, friend, Sheila and about 2500 other people. I had a very nice time. My mother has been diagnosed with colo/rectal cancer and they have decided that due to her age and heart condition that they are just going to give her morphine to manage the pain and not treat the cancer at all. She has conjestive heart failure so chemotherapy is not an option. Her doctor called me when I was driving out here to Oregon. I told my sister when I got here and I told my brother when he called me after the walk this morning. That was hard, but all of us were pretty much prepared for this news because of all the specific tests they were running on her. I had already talked to my brother about how hard chemo was on me and told him that I knew that Mom couldn't take it. My sister already knew this too so as hard as it is to accept, we are sorta okay. I just hate cancer all the more now because it took my father and now it's going to take my mother and the stinking stuff tried its hardest to take me too. I'm going to raise scads more money for my Relay for Life and help fund the research for a cure. Anyhow, big sigh, I'm calmer now--I will be in Oregon for the next week and then Sheila and I will drive back to Montana and take my sweet sister with us. Guess what? I'm not even sore from all the walking--heh, heh-- Life is Good Smiles NancyLee
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NL, very sorry to hear about your mom. You've been through the wringer. Hugs to you and your mom (and your sibs).
Paula -
N.L. sorry about your mom. You are a go-getter on the cancer money girlfriend. Janie, I would like to say I feel guilty eating rich fatty food at a good restaurant but truth is I don't....at all! It is heaven. Man if I had a webcam I would run the rodents from your houses some mornings. Well most mornings. O.K. all mornings but in my defense I am not a morning person. I sleep in old t-shirts and crappy scrubs I ripped off years ago and a few newer ones my future son in law gives me when I go out west. I wear the scrubs in the daytime sometimes because they are so comfy. My hair before the hot tar is applied and smoothed out with the steam roller I borrow from the city road works dept. looks like bozo the clown. Yea, that woud be pretty Eye-Opening for yas. I can think of a few people I would lke to webcam that picture to though like the utility co. for their high bills last winter. Well the house is still standing and hubby is working on his woodworking projects. I can't beleive how great his clocks and wall hangings are but he can't fix a door knob. The craft show we are doing is a small farming town, o.k. they all are here but he is making key hangers that are tractors. They are really nice. He is making fish (like bass) ones too since a lot of people are fishermen here. I hope he sells a bunch to lift his spirits. His work is really beautiful. Well I better get so later girls, Mary
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Here is a picture of me at the Komen race in Helena. I think it will work.
http://s192.photobucket.com/albums/z277/NancyLee13/ -
NL, So sorry to hear about your Mom. That is always difficult news to hear and to pass on. Your pictures are great. I was asked to participate in one in September and said I would. I hope I hold up as well as you did. I guess the legs are ok. I could not believe how much my right hand and arm have atrophied due to the prescribed non-use. Sometimes I wonder if it would not be better to use them. The OT had me try to resist her pushing the arm down. It was pitiful. I used to be pretty strong for my age.
PJ, is the MAC doing well?
Mary, glad the house is still standing. At least Tim is good with woodworking.
I am waiting for the UPS man to come with my machine so I can tell him to return to sender. I decided my part of it (close to 3,000) was not something I wanted to invest in. I can continue to massage myself. Shucks, it would be cheaper to get a husband to do it. Maybe. anyway, since i decided to decline the machine, i feel like a weight has been lifted. i am trying to retire SOMEDAY!
Kathy, thanks for the pm.
Have a good evening girls.
janie
phone rung as i was typing. custom-fitted sleeves are in. i will pick up in the morning. -
N.L. you look great. I am planning on doing ours but I don't know when it will be yet. I thought it was usually in June but haven't heard yet. Janie, does the hot tub help? I don't know about the heat helping but I was thinking of the whirlpool affect and circulation. Well I best get, hubby and I watch King of Queens and it will be on at 9 then theres another on at 9:30. It is reruns. We never watched it on prime time but we love the reruns. Wished we had known it was good. Well better go. All you girls have a great evening. I just love sleeping with the windows open. Nite, Mary
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Windows open? Boy, you must not have the heat and mosquitoes we have, Mary.....
NL, very cool pics. It's amazing how much fundraising you do. Keep up the good fight.
Janie, so, no machine massages? What's your next step? I heard pool work is great for lymphedema. If only I had one. We have a dinky plastic one in the back yard, but, well, it has dogs in it all the time.
The new Mac is fun. Lots of bells and whistles. Had a couple video phone calls yesterday. Played some games. And it just does some other cool things. Oh, yeah, and email and internet.
Tomorrow, I call the PT folks. Didn't get a chance to today at work. Not looking forward to it.
Paula -
Hey All,
Mary, I have not tried a hot tub but would like to; however, I was told not to let it get over 96 degrees and not to stay in more than 15 minutes. Heat causes swelling. I was told that swimming would be great for it. I do not have a pool but may look into visiting those who do this summer. That is the one place I would not have to wear a sleeve because the water compresses. I would love to go swimming. Used to swim every day when I was a kid. Even raced on a team. many many many years ago.
it is raining. in fact we have severe storms. that is ok. we need whatever rain we can get. the smoke in s ga is visible for hundreds of miles.
going to watch the tn lady vols softball team play for the world series winner tonight against AZ. If TN wins it is over (best of 3). -
Hey girls, P.J. yea we have skeetos and they carry West Nile but we have screens so they don't get in too bad only when the door is open. They haven't been real bad yet because we haven't had the rain we usually have in Spring. The city sprays every couple wks. in summer some no doubt toxic crap that is giving us all cancer but we still get them bad.Janie, I had a friend growing up whose mom was an Olympic swimmer, it is sad because that was way back when and she married an abusive alcoholic and today she would have been rich(she died). She never bragged about it, never even talked about it but her daughter showed us the medal once. No one knew except her family. Gotta get. Mary
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Hi My Junies--It is raining and raining here in Oregon and they are in the middle of a drought so they are all thanking me for bringing the rain. I figure it might have followed me from Montana since it was raining when we left and the rain followed us all the way to Idaho and then started again after the Heaven Can Wait on Saturday and hasn't quit since. The underpasses are under water here and the highways have big pools of water where the ditches aren't deep enough for all of it. I'm laughing and hoping that it really did follow me and isn't filling up my basement or leaking all over my living room at home. My friend, Cindy, is going out today to clean the cat box and check my basement and turn on the pumps for awhile if need be. I choose to not worry about it because there's really nothing I can do from here!! I find myself Scarlett O'Hara-ing a bunch of stuff while on vacation. I think that's allowed--right?? Best get back to vegging out-- Life is Good Smiles NancyLee
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are you allowed? i don't know. i will think about that tomorra' . hope you have a pleasant and wet trip since they need the rain.
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"Frankly My Dear", you are. Janie that was an awsome game lstnight. My grandson stayed (the 15 year old) and we watched it. He is a big sports fan of all sports but he is a pitcher so he loves ball. That was a long game. Gotta get, later ,Mary
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