Chemo in Sept 08
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Genia - we will probably not ever be the same, but it's not all bad.
I feel that I am a much more compassionate person now. I would like very much to be a mentor in the program "Reach for Recovery". I felt so alone when I was diagnosed - all I wanted to do was talk with someone that had "been there, done that". I did not know anyone with bc so that's why I turned to the computer (and sooo glad that I did). I would really like to be there for someone so that they don't feel so alone.
Jane - where would a hot flashin, power surgin, woman find a "chillow"? I soak my pillow every night - yuck! The surges don't seem to bother me too much during the day - the night time is a different story!
Beverly - I haven't been to Boone since I found out that I'm a Winkler - will have to take a trip and see the old homestead...lol. And - if you ever need some more belly fat - I'd be willing to make a donation - just for you of course! Hey - we seem to be living parallel lives - I had reduction mamoplasty also. My lump was missed on normal screening (onc said that it had to be growing for at least 5 years). I finished chemo Nov 13th. I was told that I would only need rads if I had a lumpectomy or if I did not have clean margins. I had a 3mm clean margins.
Juli - it takes some time getting used to a wig. When I first started wearing one I felt so conspicuous (like I was a big-ole fake). But then I got used to it and actually like it now. You should let us see a picture of you with your wig.
Chris - a haircut! Wow, that will certainly be a milestone for me! Does your hair have any pigment? I look like a survivor from the "Winter of the Discount Tent".....my hair is mostly very fine and white.
Trude - I had a bilateral mast and I had to fight tooth & nail to get my surgeon to agree - he was actually very put out with me - but I stomped my foot and held my ground. My insurance paid for it too.
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Donna.....my hair doesn't have much pigment either. It's white and rather wild looking. I look like a survivor of a nuclear war.......lol But hey..........it's HAIR!!! Or at least that's what I think it is....lolol
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Girls, I finished treatment on November 17. My hair was colorless until last week. Now that there is some color coming, it looks a lot more like hair! The color started coming in the back, had to use a mirror to see anything, but now I can see a little color on the top also.
It really does come back.
Chris
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I showed my bumps to the doctor today and he found a couple more I hadn't noticed and said they were attached to tendons but he didn't know why. H&H keep going down. Got another Aranesp injection and I have to have H&H done again next week. I get my nasty shot on Wednesday. He also told me to get a calcium/magnesium/zinc supplement and increased my Ativan from 1 to 2. Maybe I'll sleep tonight (I hope). I haven't slept in 33 hours now. I'm supposed to work tomorrow but I think I'm going to call and leave a voice mail on my boss' phone tonight before I go to bed and tell her I'm calling in sick so I can sleep in tomorrow morning. We're also supposed to get a storm tomorrow and I'd rather not have to drive (or walk) in it if I don't have to.
Only one more to go!!!!
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Wink - I got my chillow off e-bay brand new in the box for $25.00, but if you google chillow, somewhere their web site will come up in the search. I used e-bay because then I could pay for it with paypal rather than have to give them my credit card number.
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You can find Chillow's at drugstore.com. I ordered one a couple years ago with my FSA $$. Unfortunately, when my mom was helping out when I had my mast, she must of not thought it useful and has now put it somewhere I'll never find it again...Ah the downside of having Mom come visit!
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Jane - bumps attached to your tendons? and the doc doesn't know why... how reassuring - NOT!
I have a chillow that I got on ebay, but haven't tried it yet.
Now everyone don't fall over laughing at my wig pic.
It doesn't even look like me!0 -
Hey - my oncs office thinks I am whacked. They never know what to do with my problems. I was so dizzy I was afraid I would faint. They could never figure out why??? Then last Taxol, my toes went numb during the infusion....they didn't know why that happened either. I'm beginning to think they just don't know much of any thing .....LOL
Wink - Spring Thanks for the mast info. I am still working on what to do. I feel like you Spring, since my mammo didn't show my 3cm tumor, it makes me afraid it may not find another one later.
Juli - your wig is the same as mine....even the same color. All my friends love it and want me to keep my real hair in the same style. Love it...you look great
I don't want white hair !!!! But I guess some hair is better than none. I wish my eyelashes would grow back !!!
Trude
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my hair is coming back too and seems to be whiter than before...UGH
Not been feeling good today. The fatigue is really bad this time and i cannot find anything to eat that doesn't grow in my mouth and gag me!!! Also HOT HOT HOT tonight....(just beginning for me) Also in deep need of ole boudeaux tonight....UGH can we say one more time i am glad this chemo crap is over.... I have not been in a good mood today and it's frustrating because i should be more "up" but dang i'm tired of feeling like crap!!
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Hi girls,
Juli, I forgot to tell you, it will be the year of the OX, and that's me!
Genia, I like the sound of your hair, like you say, any kind of hair is GOOD, really GOOD, stoke it talk to it and you will grow into a beautiful swan!
Jane, you must be special as you get more "little wierd things" than the others!
Had a blood test today, just to make sure I am fit for rads and my wbc is back up to 5.7, so I am very happy. My husband also bought me some new sunglasses at the weekend so this icoc seems suitable today.
Take care everyone, Singapore Chris
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My son surprised me by coming to visit yesterday. He will be leaving tomorrow to continue his cross-continental move
. He is officially out of the navy and has already been offered a job in Spokane, WA. I just wish that it wasn't so far away. He always has very cool hands and it feels so good when he rubs my head. He said that he noticed a big difference in the hair growth just from Christmas. He said that it was coming in dark in the back - will have to check it out in the mirror.Bettysgirl - I live just 10 miles north of Dillard - do you need me to pick up some Boudreaux Butt Paste for you? The Super Wal Mart in Clayton has it. Sorry that you're feelying doo-dooish - I'm sure all the rain doesn't help either. I want some sunshine!
SingChris - Yay for the good counts! I was born in the year of the Brown Earth Dog. Happy year of the Ox!
Trude - my hair is growing back - but my eybrows are down to about 3 on each side and my eyelashes are painfully thin (the bottom lashes are nice and full - go figure!) I certainly don't count on my oncologist's office for information - I usually research it myself.
Juli - wasn't your natural hair dark? Maybe that it why you don't look like yourself (to yourself). I like the style - but I think that the color (of course it could be the photo) might not be quite right for you. I have a wig that is ash blonde - it really washes me out - I look like one of the Grey Ladies from Mythology. I bought another wig that is light alburn with blonde highlights and everyone tells me that it suits me much better (i have very fair skin and needed the extra color).
Thanks Jane & B'Mom - I'll look for one - I'm tired of waking up with a soaked pillow each night.
Genia - how are you feeling today
XXOO
Donna
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Hey ladies,
And so 2009 begins.
I hope everyone ate their black-eyed peas and cabbage! Bettsygirl-- Congrats! on your last tx. Being done with treatment has been somewhat strange for me. You spend months going to the doctor every time you turn around, being checked, examined and poked at. And then your told-- come back in 3 months. Suddenly, you are 'free', and it's a little scary. I'm waiting for my new 'normal' to kick in.
Jane-- One more to go! That's great.
That's odd about the bumps on your palms. My onco gave my palms a really good once over my first visit... which I thought a little weird. I'm going to have to look up the 'chillo'! I told my hubby the other day that I was scared my pillow was going to start growing something... as wet as it has been lately. lol
Genia and Trude-- My surgeon wasn't pushing a double either, but after sitting down and talking with him and discussing my breast MRI results, he was willing to do it. I didn't have any cancer on my right side, but I did have a 'questionable' spot. It was recommended I come back in 6 months for another MRI. I said no thanks and 'off with their heads!'. Have you had a breast MRI yet? If you haven't, you may want to ask for one. My cancer wasn't detectable through mamogram or ultrasound! I had really dense breast tissue, so even if the MRI had showed nothing on the right.. I still would have pushed for the bmx.
I also had alloderm used in my reconstruction. But went the expander route.
Juli-- I know I am a couple of days behind, but how did the girl's night out go? I had one of my own last friday. A girlfriend's hubby was out of town (hunting) and she had lots of little girls over for a spend the night and invited me to tag along as well. We spent the night watching back to back episodes of 'Intervention'. lol
Chris and Spring-- How many weeks of Rads will you girls have? I hate to say it, but I was more scared of the Rads than the chemo... and it's one of the reasons I chose to have a bi-lateral!
Trude -- All of my lashes fell out too! I managed to keep my eyebrows for the most part. They got really thin and sketchy looking, but I didn't lose all of them. You will be surprised at how fast the lashes come back, or at least I was!
Re wigs-- I have just about abandoned mine. Like Donna said (I think?) I always feel like a big faker when I have it on. Maybe if I'd stuck it out, I would be more comfortable with it.
Chris-- Congrats on the haircut! I have to admit that I'm a little green in the face over it-- even if it was nothing it get excited over. I'll be so happy when my scalp isn't visibl anymore! The sad thing is I think I have some sort of male pattern baldness thing going on in front! I have hair everywhere but right on top.
Wink-- So glad you had a nice visit with your son, I know it must have been bittersweet, since he is moving away.
I forget, have you already had surgery? I'm sure I've read your answer before, but I can't remember anything! I ask because dh and I have discussed a trip to NC for my nipple tatoos when the time comes. makeupchicknc does really nice work..
I think that's it!
Much love,
Lei
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I SLEPT last night. I took 2 of the Ativan the Onc gave me, coupled with 36 hours of no sleep at all and I was zonked. I had to take dd to a dr appt this morning because she needed someone to drive her home and she had a hard time waking me up. Since I am now "rewarded" for taking a full day off and "penalized" for trying to be a responsible employee, I just took the whole day off. I have an appt. with surgeon this afternoon anyway. So, if I can, I'll try to catch up on some sleep during the day.
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Other than me, is there anybody else here having trouble living in the moment? Everything for me depends on a long term decision anymore. What if it's back next Christmas? Do these lines on my head look strange - is it brain cancer? I want the ovaries out - one less place for it to go. Where is it going to come back next? I'm driving myself crazy--not that I wasn't crazy before.
I'm also struggling with work. I'm exhausted most of the time, but my boss is an 18 year survivor who worked all through her treatment and had 2 little ones at home. I feel guilty every time I call in, but a friend told me that, perhaps all of these strange things happening to me are God's way of telling me I need to take time out and that if I wouldn't stay off my feet on my own He would take me off my feet. Part of me thinks that I am not working enough, another part of me thinks I am working too much. As far as my doctors are concerned, they are awed that I am working and would be willing to put me out for the length of my treatment (or longer if needed). I know it's a very personal decision, but do any of you have any thoughts/input. DH and DD are not much help, they leave it up to me.
Also, on another thread I heard about a cleaning service called Cleaning for a Reason that will come in once a week and clean your house free of charge. They called and left a message on my machine yesterday. My DH heard the message and gets mad anytime I tell him I want someone to help clean the house because he thinks he and dd can handle it. Sometimes I wonder if the dirt/dust in the house contribute to all of my infections. He swears it doesn't, but it sure would help to have someone do the big stuff like mop and dust nick-nacks. I don't usually go against what he wants, but for some reason I feel like I need to take a stand on this. It's not about him and he'll have to deal with it. I feel bad that this has been dumped on him and he says he's tired of dealing with cancer, but he doesn't realize what it's like to be in my shoes. He can forget about cancer if he wants. I can't. It's with me 24 hours a day, 7 days a week.
Sorry for the rant, I'll slink over to the bitch and moan thread now.
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I'm not feeling the best in the world Donna. Very tired and have been sleeping a LOT. I had to MAKE myself get up a little while ago.......otherwise I would still be in bed. I'm just wondering how my counts are right now....it's been 8 days today since chemo.
Jane.....you are not alone.....and I think we have talked about some of these things in our phone conversations. I could have typed out almost word for word what you just said. I think the feeling is pretty normal. And NO one should tell you how you should feel or shouldn't feel. You are the one that is living it.......and everyone is different.
I wish I did have a free cleaning service........omg I'd sure call them. In a heartbeat. My hubby tries to keep things up....but he gets so worried about me that he lets a lot of stuff go. I do it when I feel like it......but that hasn't been often lately. So it just starts accumulating.....I think it may be breeding too......lol
hugssss to the rest of you.......much love too
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For me....personally.....I could NOT have worked during this. I've thought about it.......but I know I couldn't do it. RARELY do I feel the same two days in a row. I would end up gettin fired for missing so much work or leaving early.
Some women can and do.....and I admire them for that. But I think it has to be a personal decision as to how you feel. Just like today.....all I've wanted to do is sleep. Even IF I had an office job......there's no way I could have done it today. I would have been laying on my desk.......lol
Jane you have to do what you feel you are capable of doing........nothing more!!!
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Lei - I had bi-lat mast Aug 18, 2008. I have not made a decision regarding reconstruction. There is a woman in Asheville that does nipple tattoos - she is a permanent makeup artist and has a website showing her artistry. I will see if I can find the link - I think that she does the nipples for free as a pay it forward (her mother had bc).
Jane - go for the free house cleaning and then send them over to my house! I'm with you on the "trying to live in the present". I just had my CA27-29 and it came back elevated. I see my onc on Thurs and will no doubt talk to him about it. I hate going to the triple negative discussions, because there is so much talk about recurrence - scary!
Genia - I did work full time throughout all of this (had no choice if I wanted to keep my house). I would take the Monday after my Thursday tx off and was then able to drag myself to work. Believe me - there were many days when I felt like the walking-dead, but somehow I managed.
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I found the cleaning service info on another thread. It is available nationwide. Their web site is cleaningforareason.org. Check them out and see if they have a service in your area. They are looking now for me to see if there is anyone in my area to participate.
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Well luckily Donna I managed to get my SSI and my disability. It's not even half of what I was making.....but I just have to make do with it. Some things I am doing without......like cable TV. It isn't a necessity for us.....so I canceled it for now. My Internet......different story. I would be SO lost without it. So I'm trying to keep it.......if I can.
God has somehow provided for me.....when I think there is no way.....he has come through every single time. I don't have luxuries......but I have the things I need. I guess some would call my internet a luxury.....but it keeps me sane. So to me......it's a necessity........
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Jane- if anyone deserves to b&m a little you do so go ahead. I seem to be a little of where you are now. I seem to be obsessing over the BC more now than i did at the beginning. I am ashamed to admit to you dear girlsfriends that the stress of raising two grandbabies, treatments, two crazed 20 yr olds in the house....i started smoking again and i have not been able to go back...I am a nervous wreck and of course i panicked when i found the pea size growth that we are "watching" on the other side...Now i lay in bed at night knowing that the lungs will get mets and it of course will be all my fault...Like i said last night i should be happy to be past chemo and i am glad that is over but i wake up and go to bed every night wondering when the next shoe is going to drop. I have come to hate this life that i seem to be stuck in more and more every day...Add all the thrush, food issues, pain and fatigue and i am just not in a good place right now. I know the Lord has seen me thus far and will carry me farther but i just feel like i am whipped. Cannot seem to focus on anything and SERIOUSLY want to beat the ever liviing crap out of the daughter that is SOOOOO irresponsible!!!
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Lisa....give yourself a big hug from me. Going through just ONE of those things would be enough to make ya start back smoking.......but ALL of them!!! We can only deal with so much then we break.......it's human nature!
Take a hot bath......and lock the door......and stay there until you are shriveled like a prune. lol......you need a BREAK!!!!
Big hugssssss sweetie......sounds like you need some
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Thanks genia! Needed the hugs. It has been an uphill day for me. Some days i feel like all i have done has been b&m to you girls. I hope i have encouraged some also... I am just emotionally spent today. What's the saying tomorrow is another day???
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Tomorrow is another day, but Saturday is the full moon!
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Hi Girls,
I have just spend ages telling you all sorts of things and lost the lot, how annoying, I am to tired to think of it all again, so will try again tomorrow.
Just know that I had an answer or something to say to all of you and I am thinking about you all.
Take care, Singapore Chris
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Jane,
First, a big hug! Keep in mind, I had a young son that was diagnosed with Leukemia and then relapsed, so my tips on coping are what worked for me - your mileage may vary! When my son was first diagnosed, I feel apart completely, I got very sick, which was no help. When he relapsed, I knew we were in for a bigger fight, and the odds of his survival suddenly dropped tremendously. The doctors even said they would support a decision to not treat at all, if that's what I wanted - yikes!
So, I definitely needed my time to mourn and just think about how everything sucked, so every morning when I woke up, I'd allow myself just to take in how sucky of a situation it was and just let the tears roll. After awhile, I stopped, took a shower, put on some "bright" clothes, and got on with my day. For some reason, I thought if I didn't automatically look happy, at least my clothes would, and I knew my son deserved that. If during the day, I would get bad news, or something would go wrong, I would just say, "ok, I will think about that tomorrow AM" and let it go. For some reason, having a schedule time where I was going to really go to those sad times, helped me not be so sad during the day. At the end of the day, I hugged my son and knew that everything that could be done for him was done and that for that moment, all was well, and I would go to sleep easily. I don't know if scheduling a time for just letting go would help you, but it did help me. When bad things would come up, I'd think about Scarlett O'Hara's last scene in Gone with the Wind, where should said something to the effective of, I can't think of that right now, I'll go crazy if I do. I knew that I would think/cry about it the next day. Even thinking of that scene when I got bad news calmed me down. I had plenty of bad news. My son was in the PICC and earned the title of "sickest child on the floor" at one point. There were many, many dark moments during that timeframe, but this strategy worked for me. As time went along, I no longer needed those morning cries, but I knew what to do if it started getting overwhelming.
As far as cleaning, there is some support to what your husband says. They tested a room where someone cleaned every day, and someone who cleaned minimally. The study actually showed that the person that cleaned every day had more germs spread through out the house, where the other person had localized areas of germs. Sometimes cleaning makes the germs go airborne. That said! Nothing feels better than having things in place, so if you want the cleaning group to come, and they are wanting to help people that need a helping hand during tough times, I say that is a win-win situation!!! Just let him know that though your daughter can and will still help out, this group really wants to help and you think it is a great idea. Maybe ask him if there is something he would like done or not done by them. Maybe he just doesn't feel like he is sharing in the decision, and that can make him be dug in. On the other hand, he may just not be understanding how you feel - you make the call!
As far as worrying about the what's/if's of it coming back, here is the thought that gave me ease. If the cancer were to come back, there would be plenty of time to deal and research it them. I was NOT going to let the thoughts of it coming back ruin the time I had now. I refused. This wasn't a switch, but when those thoughts would come into my mind, rather than acting on them, I would just think the thought above, that if it happened, we would cross that bridge. There is research going on every day, so it really didn't help to research now, because the tools to treat relapse or a new cancer may (and likely would) change by the time it came back (if it does). That said, about once every couple months, I did take a couple hours to see where research was, so that when my son did relapse, I did know of the current treatment options.
You didn't ask, but if you've looked at Statistics and they have you scared, ignore the statistics. You are not a statistic. If cancer comes back, it does. If it doesn't, it doesn't. It doesn't come back in an individual person 10.8%. It either does or doesn't. And don't tell me, ok that means 50-50 chance! I just told you to ignore statistics! Statistics are by definition old. When my son was diagnosed, there was a great likelihood he would die with 2 weeks. He didn't. After that, there was a great likelihood, he would never replace, well, he didn't go with that great likelihood either. Worrying or taking comfort in either statistic didn't matter. I could go on with what the statistics said versus what happened, but I think you get the point.
I'm honestly not sure if any of these tips will help you, but it did help me. Don't let the fear of cancer rob you from wonderful moments. Easier said than done, I know, but life is about moments, and we just need to figure out a method that works for you. I hope what worked for me might give you some ideas. Do stay in touch. BTW, I'm not a just "think positive" person. I HATED those comments, "oh I'm sure it will be fine", "you are so strong", "just think positive", ARGH! Again, that was me, I know some find comfort in those words.
Enough rambling on my part, but one final BIG HUG!! Hang in there! Some times in life, the only thing you have to do, the only thing you can do is breathe. In just a minute, you will see that you got through a moment that you just didn't think you could!
OK, couple closing thoughts, a friend once quoted a famous leader something to the effect of, You don't get to choose your battles, those are chosen for you, but you can choose how you handle it. And my Dad, who rarely did anything right, sent me a card one day that said it was a magic card. To place it under your pillow, and the next day, you are one day closer to being better! What a nice thought! So for every sucky day you go through, that's one sucky day that you had to go through down! Woo hoo! I did find as time went along there were less and less sucky days, and sometimes progress was slow. OK, he only threw up 5 times today! But try to look for those little signs of progress. It may still be sucky, but look for it being just a little less sucky from one day to the next.
OK, OK, off the soapbox! BIG HUGS FOR EVERYONE THAT NEEDS THEM!!!
I'm off to my second Taxol/Herceptin!
Colleen
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Colleen......thank you for writing your post. It was meant to help Jane.....but what you don't realize is.....it has probably helped EVERYONE on this board. Because at some point we all feel doomed. And our lives will never be as they once were. And it hurts to know this.
hugssss sweetie.....and thanks again
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colleen- i think we all needed the encouragement. Thanks for your post.
Wink- I apprecaite the offer of the boudreauxs but i can get it at the local cvs ...but i appreciate the offer and wish i was in Dillard now....with the exception of the rain. We go through there every year as we go to the mountains for our anniversary. Maybe when the buds get better we can go to the dillard house and CLEAN THE TABLE! LOL
Toady has been a little better emotionally for me. I am still wiped out and soooo fatigued which of course DH says is because i am not eating.....tried eggs today YUK!!! Ate some fruit last night and it was fair...I am keeping the gatorade ect down as i don't want to get dehydrated but the thrush decided to make this last bout the very worst...Ironic huh??? When this is gone the toothbrush is going FAR FAR away!!!
I looked at the stats of the 3a cancers early on but the statistic the onco gave me was 50-50. In the end I think that is all we have to look at. I just want to get to feeling a little better soon..I thought i was gonna try to work today but could not get going. Still having tummy troubles and the smallest baby kept me up last night a lot while mom was at work.
Genia- I did take that bath last night...pruned and all. It was a nice quiet reprieve if only for a little while.
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Colleen - Thanks for the advice. It amazes me sometimes how resiliant we can be even when we think we can't.
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Jane,
Yep, despite all those "your so strong" comments, the reality is there really was no option except to play the hand I was dealt. The reason I hated it when people said, "Your so strong" was that I felt that I then HAD to be strong around that person. No one can be all smiles all the time. This mess sucks and sometimes you just gotta say it! I found that during that timeframe, I really just wanted to be around other moms with kids with cancer. You would think we were a sad lot, but actually we all knew what each other were going through, so we were comfortable with each other that we could just cry together or laugh together without feeling like we had to instantly patch each other up with an empty, "I'm sure everything will be fine". Lots of times we would find ourselves laughing hysterically over things that no one else would think was funny. I think that's why I love this board so much. It is very similar and I think we have all found ourselves laughing over our "issues" that no one else would find funny (the diarrhea versus constipation war is one of those). We can say whatever, and every one understands. The good times, the bad times, etc., and the bad times are not so bad when you can share them with a group that understands.
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Colleen - thanks so much for sharing. It makes things easier to see others struggling with the same issues. Each of us has to find a way to cope, but hearing how others handle the stuggles often gives a new insight for ourselves. I so appreciate all the support and help from each person on this board. I agree on the comments "You're so strong" I just want to gag sometimes. I know they mean it as incouragement....but if they only knew how I felt inside.
After my last Taxol tx ....I had a reaction and just didn't feel right all week....now I have to go back tomorrow.....UGH!!!!! I just don't want to. It seems I did really well for the first 6...and now I am more tired.
I have worked the entire time. The hardest was during AC. I did tx on Thurs....work half a day on Friday, then back to full day on Monday. I did cheat and go to my car at lunch time for a nap. I kept a pillow and blanket in the car. All the girls I worked with knew if I didn't show back in the office at a certain time.....they would come and get me. What great ladies I work with. It's really too bad money has to rule this time in our lives, but it just is what it is. We do what we have to. I will be glad to put the chemo behind me.
HUGGS for all today......
Trude
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