Chemo in Sept 08
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Can I ask that in addition to praying for Callie, you pray for all children with cancer? It is an awful disease that affects babies through teens. They can all use your prayers. If you have the inclination, think of donating a bouquet of mylar balloons or something to your local hospital's pediatric oncology wing. It really does mean a lot to the families when someone in the community does something to show they care. You feel so isolated, and let's face it, most people don't want to think about childhood cancer.
Since my son was diagnosed with cancer, my views on a lot of medical issues has changed. For example, medicinal mariguana (sp). My son also struggled with nausea. Wouldn't an inhaled medicine that relieved nausea and spurred on appetite be a welcome thing? I can remember many times me and other mom's bribing their kids to just take one more bite...I know there is marinol, but just thinking that like other drugs, mariguana should just be regulated, dispensed, and ordered just like any other drug.
Getting off my soapbox, with the one last message to support your local hospital ped onc dept. The kids in the news stories usually are flooded with attention, while kids in similar situations are ignored and isolated.
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Hi All,
My goodness! I take a computer break for the weekend and the Chemo Sept 08 thread gets prolific in posting!! Love love love to see updates from you cuties!!
Colleen, I just can't stand cancer! And the Children. It is such a beast. And so unfair to a child. I pray we soon will "crack the code" on it. I was heartened recently to hear about "PARP inhibitors" on the news. A potential cancer breakthrough having to do with not allowing cancer to "repair" itself. Shows promise. Ahgh. frustrating.
Genia, a backwards aorta do-thingie?? No wonder why your port made you bats. I probably have one too. That port was the worst part of chemo for me. Hated that stoooopid thing! Are you thinking to ask about your discomfort?? Maybe it's nerves, but you know, with us, we have to check everything out now... Let us know what you find out..
Went to see my GP today and the good news is I have lost 7-8 lbs since January... Been walking about 20 miles a week (well, walking and eliptical cross trainer). I read that exercise can help us metabolise sugar and estrogen, things that can keep us from getting a reoccurrance. So my DH is the drill seargant, getting me out of bed at crack of dawn to walk! The GP was also okay with all the homeopathic things I am doing in addition to the medical things, so that was good.
Yes, well. I need to have more surgery, as I mentioned. The implant is just not doing well b/c of the rads, it's all on that side. It is very tight and sore!! I just can't keep it this way for the long term, so biting the bullet. Believe it or not, they will remove the implants and then rebuild boobs with my belly fat and my butt fat. Won't that be nice? To have boobs and less fat!!! I am trying to see that glass half full. I am a little scared of the big surgery, You can all realate, I KNOW!!! but know it is the right thign to do, and the surgeons in New Orleans are the best in the world at these procedures. It will be in early Sept, and then the final surgery in early Dec. By 2010 I should have it all behind me!
Behind, get it??? LOL... oiy.
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Beverly - you silly girl... if you lose too much belly and butt fat, you can borrow mine. And I won't ask you to return it! LOL
hugs
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heck- if we're loaning out fat i could reconstruct the whole group! Maybe even the whole boards!!
Coleen- I agree with you. We do need to remember all children with cancer. It is a HORRIBLE disease and this area is where my faith struggles because I DO NOT understand why a child should have to suffer so. I heard today that one of the moms who is giving a bday party for her baby (to be 1) put on her invitations that she wanted no gifts but she wanted everyone that would have bought a gift to take that money and give to Callie and her family. We need to support these families in any way we can. The children' cancer clinics can always use donations to assist families. I just don't understand childhood cancers. It totally sucks.
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Hi girls,
I agree cancer sucks! It is depressing and it's unfair, but we must try to look forward and like you all suggest, do what we can for those in need, especially the children.
Spring, I am sure you have thought through the pro and cons and have come to the right decison with regard to your surgery. I hope you have enough butt fat to do the job, I can also contrubite if necesssary. Like you say, it will all be behind you soon
Juli, how are you feeling?
Take care, Singapore Chris x
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Okay, I am the "butt" of all jokes!! LOL. You ladies crack me up! Apparently you must have your "own fat" so you don't reject it.
Wouldn't it be great though if we could donate our fat for a good cause?? What a thought!!
Lisa, I had to laugh at you reconstructing the whole thread here, or the whole board. lol!!
Well back to work.
I am taking off Thursday to do my vision board and some art therapy, and reflect. This is the same week, one year ago, where I was diagnosed. The next day I am taking off as well, and we are going to Washington DC to visit my older daugher (she has a summer internship there) and we're going to PLAY!! It is a really fun city to play in for adults!! We are staying in a nice hotel that I got at a super good deal. So, reflection, and then celebrating life.
Happy "anniversary" to any of you other ladies who have already passed or soon will reach 1 year since diagnosis!!! We made it ladies!!!
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Chris - Thanks for asking. I feel great, except when I get hot. Even talking can start the stinging. So I am the most patient, even keeled person you ever saw! LOL
Beverly - Today is my "cancerversary" date (and my brother's birthday. I remember calling him last year and saying, "Happy Birthday! I have breast cancer". Amazing what we've all gone through in the short span of a year. All seems so surreal now.
hugs
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Juli- Congratuations ofn marking the year point. It is quite a surreal thing. I think we all remember where we were and what we were doing when we heard those words..
Spring- You're right there too. (10th i believe).
I'm up again - this is the third time tonight.I guess a full night's sleep isn't in the cards anymore.I have had a lot on my mind but not overly more than usual i don't think...i have been having trouble keeping my cool at work since I am so tired...
have a great day ladies.
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Hi girls,
Happy Anniversary girls. I had my general checkup today and all is well, no lumps to be found, all bloodwork good, my wbc is still a tiny bit low, but my oncol says it can sometimes take a year or two to get back to normal, as he said, I was one of the ones who got hit really hard by chemo (9 months). I am not at any higher risk of catching H1N1 than anyone inthe street.
Good luck with the vision board Spring, I am sure it will do you good. Enjoy your reflection time!
Juli, I can imagine you just standing or sitting trying not to talk, good job we have the internet, hope typing doesn't make you hot.
Take care everyone, Singapore Chris x
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I know I'm a little late but I hope everyone had a great holiday. I watched the fireworks on the telly and enjoyed them v.v.v much....Wow, I 'm going to need time to read all the posts...good to know everyone is still here
Robin, thank goodness you were approved. I think we all know how infuriating insurance companies can be especially when they need to be helpful. arrgh.
I hope I said hi and hugs to everyone on Facebook. I'm mentally down tearful and v.v.tired...I guess this is the tiredness I read about.
Yesterday I had my 5th boost. The tech says to me loudly,"your markings are gone!" I say yes they are, but so is my SKIN! God, I hate Mt Sinai!
I must find a different set of Oncology pros if this returns. Good lord. They were fussing at me and very upset about my not having markings. I said look...my skin rolled off. I am pinkish brown and burned here and there on the boob. Then they grumble about making new markings. Then she wanted to tape me...I say... I'm alleric to tape. Oh, well, says grumbly Annie, You have a piece of tape over your port...it's a small band-aid which I'm not allergic to at all. I tell her how tape make me blister turn red and swell... even paper tape...she looks as if doesn't believe me... I hate this Mt Sinai!.
Genia, NO you never mentioned a backwards arch.:) Girl is it any wonder. My doc must be keeping my port in to make flush money??? I want to go to St Luke's and let them remove it since they put it in. I can't take anymore treatment at my present hospital.
bettys glad you are back home and resting..
Michael Clayton, stars George Clooney, who makes me positively loony he's so hot, is about a weed killer which also kills humans. The humans have instituted a 450 person class action 3 billion dollar law suit and watching what UNorth does to lower the payout...they know their product is a killer of people... is unbelievable. This movie makes me worry about what's been done to us by the industrial titans of this country, NYC is among the toxic...Our mayor says it's impossible to put signs at every river and lake warning people not to fish. WHAT? People are fishing to eat, people who don't ordinarily fish. Our mayor astounds me...he is good in many ways and then he says something like this...arrrgh. Put some signs up dude..Duh!
I have to go have my boost then 2 more after today. I'm sick of Cancer and Mt Sinai!
I think a new PMD has to be the answer for you...we need good care,
I'm glad the Effexor is helping Juli...I don't know if it's helping me but if I stop taking it I start tearing up up and crying at street crossing lights, "Oh, I love that color red"...sob sob
lol:lolback soon to read and post more...I'm so behind:)
m
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Mina - you are so close. Prayers for your skin to heal fast!
Anyone losing their eyelashes and eyebrows again? I heard it could happen a few months after stopping Taxol, but this is ridiculous! I stopped it 5 months ago! Taxol...the gift that keeps on giving!
Chris - I can talk... just can't get too animated. LOL Good thing typing is not a problem.
hugs
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Funny you ask about the eyelashes, Juli. I think mine are falling out again, too, and I thought I was going crazy. When I put mascara on, there's not much there and I keep finding stray lashes on my glasses. I hope they don't all fall out again like last time. My last chemo was January 19, you think this stuff would be out of my system since then.
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my eyelashes are still there but my eyebrows are still sparse...i AM NOT complaining bout that but i sure do wish the upper lip hair would have stayed gone OR come back grey like my hair...and I AM NOT enjoying shaving my legs again.
Callie is still having a tough time of things they had to do IV pain meds as the pills were not compatible with her chemo...they put her on a pump and the IDIOT that set the pump up set it for her to recieve 5 times the dosage soooo because of the OD on pain meds she could not get nausea meds.....SOMEBODY wouldn't have a JOB when i got through complaining!!!
Mina - I hope your skin will heal quickly. I think I would have a good old southern "hissy fit" if I was that burned and all they were worried about was that their friggin marks were gone. Some people are SOOOO insensitive. Sending you healing vibes.
Chris- glad everthing checked out good for you. I know those WBC's will come up soon. I know you are glad to have another good checkup behind you.
Have a great evening ladies. Been a long day at work and I am pooped. i took a Davoset last night hoping to sleep and was up more than usual....have to get a Plan B.
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Mina....bless your heart. I wish I had been there when they jumped you about those stupid markings........I would have let them have it with both barrels!!!! That's ridiculous......
PLEASE don't tell me I could lose my eyelashes again.......omg......I think that was harder to handle than losing my hair. I hope you two don't lose many.........if any more!!! Enough already......geeeze!!!!
I'm still my tired self......vitamins and all.
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Juli, I have my eyebrows and lashes back now, but I did lose them after I finished Taxol. Weird, huh???
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Colleen - Taxol must take a really long time to get out of one's system. I'm hoping that's the case and when it's gone, the stinging will leave too.
hugs
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Juli - I hope you're not taking Femara, because it stings. It's funny how people seem to think that when the chemo and rads are over, everything is behind us. They don't realize how long it takes for some of this to get out of our system. Add to that, most of us will be taking "chemo" drugs for the next 5 years. I actually read on one of these threads that Tamox and AIs are considered chemo drugs rather than hormone therapy. They aren't hormones - they either inhibit the production of hormones or they inhibit the body's ability to synthesize hormones. I long for the day when I can put this behind me, but I don't expect that to happen any time soon.
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Hi Ladies,
Wow, I have not fallen off the face of the earth....just been too busy to be online. Julie, thanks so much for the eyelash info, I thought I was going crazy !!! I had no idea they would come in and fall out again !!! Crazy....My onc hasn't seen me since the end of chemo....but my wonderful breast surgeon ordered me an MRI...but when I went, they hooked me up and did the first scan, then had to stop....the darn tissue expander was causing the mri to send off a black out thing. ??? I called the plastic surgeon and was told there was no metal in the expander...but they have had this happen....so the radiologist has to call the manufacter.....WOW....
I am about a month away from my anniversay. Not sure how I feel about that. I really wasn't worried about the cancer coming back while everything was happening....but now I am second guessing everything !!!!
Oh, and spring, you can have some of my extra butt too !!!!!
Love you all...Trude
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Juli, I've read some of us may lose our lashes and brows more than once. arrrgh!..Cancer; the gift that keeps on giving.
I wanted to come on and post, though I have more reading, to could include my prayers for Callie and Hallie. Our children should never ever have to suffer this disease.
I had a look up close and personal approximately 15 years ++ ago when my neighbor called me over to check out her son's stomach and thigh bruises. I remember teasing her; he was very white and blond so I expected some black and blue bruises cause he loved to play, but his middle and inner thighs were covered with bruises.
I was a practicing RN back then so my knowledge base was pretty good and of course my ER experience...so silly me...I teased her about her son's bruises in all the wrong places.
Very young children who have thigh and stomach black and blue bruises are almost always suspected child abuse victims;. Children usually play and fall bruising their knees, elbows, and shins... not their thighs and stomachs.
Meanwhile, she called her doctor and told him about her son's increasing thigh/stomach bruising. He told her to come into his office immediately. She pulled me into her truck, her husband popped in and all of us took her son to the hospital.
I sat in the waiting room for about 40++ minutes. When she and her family opened the doors they were holding their son and crying.. He had Leukemia. And then it was ON!..We went to LA Children's Hospital the next morning; from then on it was pure hell for that wonderful little guy and his family. He is a survivor and is probably in college.
I really need to find her again. She and her hubby divorced, he remarried and started another family, but she may still live and teach in that same town. God, when I remember what hell they and some of us went through...the tests, pain everyday, and all the while he took it so well. He was a Super Trooper.
Talk about giving her respite for wine and dinner...thank goodness we all could do that for her.It really did help her to deal with her son's unexpected life threatening illness...Cancer..
Please let Callie know I love and care for her and that I pray for her constantly and Hallie well of course she is always with me.
bettys, I would like to do just that:) Where is the consideration and compassion? They give them too much work, so and they have no time to bond with us at this most scary crucial time in our lives. I feel sad there sometimes, because I would like to talk but they always make me stop talking and get into position. OH well. TWO MORE DAYS!!!
Has anyone tried the Lerissa sps. think that's the spelling of that medication. It's expensive...I don't know the price but the results seem great, but temporary. I would try it just once to see new pretty thick lashes.
You're right Juli. Taxol takes a long time to leave the body .My fingertips are still numb and and part of my big toe feels numb near the top; I finished Taxol after two treatments in February!
Trude, I know I can share my butt too:lol,,,I hope all is well with the MRI.
I was told to take it easy showering today to preserve the green marks. I'm going to wrap part of my chest in Cling Free
lol...one of my mates just redraws her marks...they don't know so I let it go. I asked if they minded me drawing my marks again if they disappear...NONONO...I might not get the marks just right...The boost goes on for 45 counted seconds....that's normal says the resident.Spring, girl, I got loads of extra booty fat right here for you girl:)
Jane, I didn't know that Femara stings.
Why is that person adjusting her meds...I know he must have orders but wow...why? I don't get it.Genia, I would think you would continue your SSI until you are back at work? You just completed Radiation therapy.Maybe you could hire a paralegal or lawyer to get back your SSI until you get back to work at your business, Me thinks pretty soon Obama needs to help small business and families keep above board with his insurance plans. I'm tired of waiting.
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Jane - I am not on Femara. I am supposed to be taking Tamoxifen, but I haven't started yet. I am waiting till I get back from my summer vacations. I don't want any more S.E.'s to ruin my fun. I will be in Quebec (to vist my b/f) from 7/25 - 8/5, and in Montana (to visit my g/f) from 8/15 - 8/22. I will have enough trouble dealing with heat. I don't need any other side effects to deal with.
Mina - good luck with the boosts and the insensitive boobs doing them.
Trude - good to hear from you! Still waiting to hear if my MRI gets approved.
Genia - Wishing you a little extra energy.
hugs
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juli- After all this i agree...DON"T touch the tamoxifen until vacation time is over.
Genia- I hope you feel better soon. Maybe there's something in the air. I have been one more whipped puppy since vacation.
Girls, Just think of me. I am in a deep funk right now. I'm not gonna list it all here and waste precious time (mine and yours) giving a face to it all. I am just not a happy camper right now. I took two xanex last night and crawled into bed around 9 last night and FINALLY slept all night. I think I may try it again tonight...
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Hi you lovelies!!
Well, Chris, and all, I did my Vision Board today! It was part of my "reflection time". Tomorrow is my Cancer-versary. The Vision board is hanging up on a wall now. I love it! It was a very meaningful experience. I found a "word cloud" tool on the web so part of my vision board contains a few word coulds. That was surprisingly helpful.
I have not been losing my eye brows. My eye lashes are so blonde I can't see them at all!!
Mina, any day now?? God help Mina!
OK I am taking note of all this freely donated fat in case I want really extra big boobies. LOL LOL LOL....
Love you girls!!!! Will be gone for a few days - Going to DC with DH to visit DD for a long weekend and play.
Spring.
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Word Cloud tool if you are interested. Very fun...0
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Hi girls,
Spring, excellent news about the vision board, so glad you enjoyed it. have a good trip.
Mina, you poor thing, almost there, only a few days to go. Keep on applying the cream, those nasty people at your rads clinic should try being toasted sometime!
Bettysgirl, sorry you are not a happy camper, hope all gets better for you soon.
Juli, have a wonderful time on vacation, it is my youngest sons birthday the day you leave so I will be thinking of you. Have a great time.
Trude, glad to see you back on line, try to stay calm and not worry, but how frustrating and awful to have to go back into the MRI machine, not my favourite place!
Jane, I think it is going too far to call tamox a chemo drug, but I know what you mean, my feet have been killing me for the last two days, but not much I can do about it, the feeling comes and goes. A small price to pay for life!
I still have my eyebrows and lashes, but I have notice my toe nails are not right yet, even though they have fully grown out, they half lifted and are now on their second round of recovery. Finger nails are almost good now, but still not attractive, while spots and ridges, but look great under nail varnish!
A couple of my local friends got the all clear today after a year of treatment, so we have been celebrating, it's so good to hear positive news.
Take care girls, Singapore Chris x
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I'm losing my lashes again, too...my brows are staying in place (I think).
Congrats to everyone who've surpassed their anniversary! Mine is late this month...so I have a couple of weeks to go.
My hysterectomy has been rescheduled to the 23rd, due to a mix up in original scheduling. I'm cool with that. Gives me more time to get things straightened out.
I love you gals...
Robin
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Chris - Thanks! Happy early Birthday to your son! How old will he be?
Robin - Your Cancerversary date is on my birthday...not exactly the way I want you to remember me. LOL
I will be out of the country on my birthday. I've decided they don't count that way!
hugs
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All hail the crisping Machine or how I learned to love Radiation...
Juli, once in a while think of Mina vacationing vicariously with ya:):)
{{{{{{bettys}}}}}}..I hope today is a bit better for you. I sometimes cry in spurts; if my son catches me he will tease me and tell me how great I look, so I let it go for a while.
They all tell you your hair will grow back but after Taxol, for me, it's awfully slow....oh well...it is growing in, is no longer transparent and is now white, grey and black.... arrgh. ..later is color time.
My right leg is swelling again ...not a usual occurrence--Taxol--so I'll call my doc in am and see if he wants me to do Lasix again.
Tomorrow is my last treatment!. YEAH!!! My skin is peeling and looking pretty close to my color...I never expected that though I'm sure some of my breast will be speckled brown for a while.. I can't wear low necklines ...never did...but now I'm getting used to my discolored R boob .
I tried to make myself feel better today by watching crazy Bridezillas. I knew I would need 209785409327 planners, so I had small weddings. I feel justified having my small weddings, after watching these poor women freaking out and trying to get it right. I can't stop laughing and I need to laugh since I have to deal with these crazy radiology people tomorrow.
I'll carry all your good thoughts with me tomorrow and see ya in the PM
xoxo
Mina
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Hi ladies.....love you too Robin!!! My cancerversary is 5 days before yours.......I'll be glad to get there......first diagnosis said I wouldn't be here!!!
I am getting lymphedema.......after all this time. I was in pain yesterday from the swelling under my arm and in my boob....well what's left of my boob. I don't understand it.....the only things I can think that I've done to trigger it is mop my kitchen floor. Since then.....it's been doing this. Guess I'll get to go in and see A Dr this week.....just not sure which one I should go see.
Still tired.....have no idea where that is coming from but it's really starting to get old............fast!!!!
love to you all............
Genia
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Hi girls,
Genia- OH NO....I still live in fear of lymphedema. My doc said to just be care ful and do as little strenous stuff as possible. I hope it gets better for you.
I can't remember what day it is sometimes. I had to leave my hubby yesterday. I made a big error in our finances and we may loose our home. I have had this issue for many years, I guess now I need to find a therapist to help me resolve this problem. I can't seem to help hiding and not discussing financial stuff. I left because he told me last time this happened that one more time and that was it. I love him sooooo much and miss my home. He is such a good guy and does not deserve this. I got so forgetfull with the chemo that I missed some bills and knew I was behind but had no idea how bad it was. I tried to write a check today and could not get what year it was !!!!
On the MRI, the radiology company contacted the manufacturer of the tissue expander. Even though it is mostly plastic, the valve does have some metal in it .....so no mri. The mamm said I was fine ....but it said that when I had cancer......am afraid to belive it.
I am in such a bad funk.....I miss my hubby, my dogs and my home. I feel like a homeless person. Hope God can guide me through this terrible mess I have made.
Mina ....YEA !!!!! I am so happy you are done. My hair seems to be growing slow too. I feel like a dike (no offense to those who have different sexual desires)
Love you all
Trude
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Hi Girls,
Mina, congratulations in advance for tomorrow, how wonderful that you so close to the end. Well done!
Trude, Oh god what a terrible position you are in, where are you living? Did you husband want you to leave? Surely if you are seeking help and you have had a very very good excuse for not getting things right this year, there is some chance of forgiveness. Do you have a plan, personal message me if you want me to help you in any way. Are there family members that can help you?
Genia, sorry to hear about the lymphadema, you need to see an Ocupational Therapist, who will do lymphatic drainage on your arm and whole body, it is pretty important to get this done within the first 7 days of it starting to swell, that way there is a very good chance of getting rid of it. Don't except any appointment more than a few days away. Your oncol and gp will not be able to help you other than giving you a referal, get one and go straight to the O.T, Keep us posted.
I am getting fatter! I have the heaviest I have every been today, it is true to say I have been a big naughtly lately, but now I HAVE to take ACTION, I got up went straight to the gym, for the first time in months. I am taking care not to over do it, but I am doing something. I am also going to watch every single thing that goes into my mouth. I will not let this tamoxefen moster get the better of me or make me look like a monster!
Take care girls, Singapore Chris
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