Chemo in Sept 08
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Hi all,
I've been so down in the dumps I didn't even feel like posting anything. Just been one of those weeks for me. Had lots of hopeless thoughts........and I'm not sure why. I've also been missing my mother so much....even more than usual......and she has been gone for 6 years now.
I can cry at the drop of a hat.....and I hate that feeling!!! I'm on anti-depressants......but I just think this is getting to me. I don't wanna be sick anymore. This last round of chemo kicked my butt.....and I just don't feel good anymore!
Ok I'm done complaining.....and whining!
Springtime......I'm so sorry they told you that. What a horrible thing to hear. But Drs are notorious for being wrong g/f. I was diagnosed with 3 different cancers by 3 different Drs. All of them WITHOUT a biopsy. I felt like I was playin NAME THAT TUNE (CANCER) lol We will keep our fingers crossed that it is working for you......hugs
priz......hate to hear about your mom....I know how it feels and it's a hard thing to go through.
To the rest of you......hugsssss and I think about you all!!!!
Genia
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Hey beautiful women!
Surgery went off without a hitch, my port tail was backed up almost 3 1/2 inches, and I am now the proud owner of a normal heartbeat (75 bpm!). I also had my third FAC today, and that also went smoothly...and...I've been given the ok to stop taking the Ativan and Effexor, because anxiety wasn't the cause of the wild heart! HooRah!
Jane...I'm not a new believer, I'm an old one that's fallen away, practiced Wicca for a time, then got back on the right path. I love halloween...I love candy....I love lit pumpkins...The way I see it, is that if you're not dressing up as a dead person, a murderer of some sort, a vampire, a witch, or anything else "devilish"...you're all clear. You know where your heart lies...So does God. If you're getting a funky feeling in your gut about it, then don't do it. You could just as easily paint your head orange and put a "Sunkist" sticker on it...think that would be safe?
As for Christmas...there's really no proof that Christ was born December 25, much less in the month of December at all...but christians still celebrate in the manner in which we all grew up with....the commercial version. It's hard to back away from it, especially with family and small children..but to me, it makes for a more memorable holiday season!
I sincerely hope that I haven't offended anyone...
Peace!
Robin
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Genia - I hate that crying at the drop of a hat part - it sucks. Normal for me is to never cry - then I went through 2 weeks where I was afraid to be around anyone for fear I would cry. I couldn't say my dog's name without tearing up. It was horrid. And then, it changed - and no more tears. This is such a roller coaster - the nice part is that things do change - so hang in there. Hopefully tomorrow is a new turn with more laughter in the swing.
Too bad we're not all together, or we could dress up as the fruit of the loom guys...
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It never occurred to me that chemo might not help.
Donna - I have not lost all my hair. Is that a bad sign? Is everyone else bald?
I am going to wear a witch's hat to my tx #3 on Friday. Great way to spend Halloween.
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Hopefullady,
The only public places I am currently allowed to go to are my doctors' offices. I won't be going to the Harvest Celebration at church. As Robin said, a pumpkin cannot (I hope) be misconstrued as demonic. I just think Friday is as good a day as any to let people know that it is ok to have cancer and to embrace it. Just a thought. I am still undecided. I probably won't make my final decision until Friday.
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Juli......I haven't lost all my hair either. Yikes.......I sure hope not!!!
I shave the stubble off......because I'm afraid to let it grow back because I'm afraid it will just grow in splotches.......until I'm finished with the chemo. And my nether region is just SO thin....but not all of it came out yet either. I'm such a mess.......lol
Thanks Ruth......I like the fruit of the loom idea!!! lol
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Springtime, wait until you have the facts, then take action, like have your surgery or change the chemo drugs. Those doctors can be very discouraging, I really don't think they are aware of what effect they can have on us sometimes. I have heard it said that they try not to give us hope! What kind of world do we live in, what we need is HOPE big time. You hang in there, as you said if you are 90% ER PR positive, thats fantastic! After surgery there should be no change of a reocurrence with you. It will be alright in the end you'll see
Jane M, do what you feel is right for you.
The prettiestmess, so glad the sugery went well, rest and you will be strong again soon!
Genia, Sorry to hear you have had a bad week, but that means you are in for a good one now! Find some inspirational stuff to read, that might make you feel good. Watch a funny DVD, get someone to buy you some flowers and tell everyone you feel down. They will all rally round and make you feel good I am sure. Every day for the next week I will post a positive thought for you and anyone else who needs it!
"Practice hope. As hopefulness becomes a habit, you can achieve a permanently happy spirit"
Take Care girls, Singapore Chris
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Is it against the rules to have each other's postal addresses? I know, personally, that it's always a treat to find a sweet card or letter in my mailbox at the end of the day... I tape mine up on my wall above my dresser..it's my wall of strength. When I'm feeling particularly crappy, or I'm facing yet another surgery, I can read through them and get such a boost!
I'd love to send cards and treats to you ladies...
Just a thought.
Love you ALL...
Robin
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I did not lose all my hair, but do not feel that the chemo has stopped working. Chemo works on rapidly growing cells. If all your hair is fast growing, then I think it will all fall out. If some is not so fast, I think it will linger. My doctor says I've gotten a tremendous response from the chemo (can't feel the lymph's any more, and tumor has really shrunk), but I still have a coating of hair (very, very thinned). My period also disappeared and then came back, but I think that is more my body trying really hard to "right" itself in light of all the poison it is being subjected to. As my gyn says, even in regular menopause, women often don't just do a switch overnight.
My son also did not lose all of his hair during chemo, and he has been 10 years cancer free.
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Oops, hit submit too fast. Also, on the decorating head for halloween thing, I don't think if someone paints their head like a jack o'lantern, it makes them any less in God's eyes. On the other hand, we all pick our battles, and I'm not sure this is one that I'd be willing to push with a spouse in light of everything else that is going on. You could still be bald is beautiful, without a pumkin theme. Maybe a big yellow smiley face would have just the same effect. When my son had chemo, we would sometimes paint a face on the back of his head and say we couldn't tell whether he was coming or going (BTW, my son lost his hair the first time, but didn't lose it the second time until he had radiation )
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Robin,
I agree with you. I would love to share addresses and, perhaps, phone numbers. It occurred to me when I was in the hospital that, God Forbid, should I have died, no one on the site would known. I have grown to think of you all as a second family. Personally, I don't care who has my postal address - it's a matter of public record. Anybody could google it and find me.
A while back, I belonged to another support group and every Christmas we kind of drew names and sent holiday ornaments (not necessarily Christmas, depending on religious preference). One time we exchanged recipes in our holiday cards. It was fun.
Is there a way to PM a whole group of people?
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Good to hear, Brandonmom! Thanks! 0
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I never had my head shaved to "shiny bald" and I still have some stubble there too. I have all the hair on my arms yet. I have heard on some of the hair threads here that it can still fall out, sometimes after chemo is over, like the eyebrows and lashes often do.
I like having some hair left, but I'm not counting on it staying.
Chris
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Well.... I'll put out my PO Box address for anyone who's interested...
Robin McRath
PO Box 494
Ludington, Michigan 49431
Anyone who might want to exchange a phone number, I think it might be best if we do a PM...
Hopefullady... I also have all of my arm hair, my brows and my lashes...my leg hair is still trying to come in, and I will take it off once a week...I have to shave the stubble on my head (which is coming in silver, BTW) every two weeks, because it tends to stick to my bandanna or scarf... and it makes me feel grungy somehow, even though I wash my head with a really cool minty/tea tree shampoo...
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Wow! That's so neat. I never realized how many of us really do keep at least some hair!
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My address is:
Donna Lander
388 Southgate Rd
Otto, NC 28763
I already posted my cell # a while back, but I too have wondered "What if?". If something should happen to me, I will have my dd send a post.
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Hi Ladies,
I feel somewhat better today. Finding out the chemo may not be working was hard to hear. But, only surgery pathology will tell.
I think hearing "non-responder" felt personal to me! Like I was a non-responder! Which, (if you knew me) I AM NOT!! I am such a go getter. This tumor is so unlike me!! ha.
Genia, are you taking steroids? Or any of you crying at drop of hat? I found that steroids made this worse. (Also hearing chemo may not be working also made me cry at drop of hat, but that is another story! We can't have all "good positive" days. Some days just SUCK).
Anyway, ON we go.... I am going to think positive for now. Today is a better day. One day at a time...
Springtime...
PS Did I tell you I had a dream I had 1.5 inches of hair all over my head, and when I woke up, I was quite shocked that all I had was stubble! I think I am ready to be "beyond bald" !! ha!!
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Jane Murphy
15 Barton Street
Millerton, NY 12546
My surgeon told me I could use something like nair on my arm pits and legs since she doesn't want me to use a razor. Do you think these things would be safe to use on the head?
I have decided to go ahead with the Halloween head. I have not said anything more to my husband, nor has he. By the time he gets home, it will be washed off.
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Springtime......I love your attitude girlfriend. Wish I could be that positive. You ALL amaze me at times with your positive attitudes!!!
Yes they give me steroids. The day before.....the day of....and the day after chemo. And you are right.....I think that is some of what causes the horrible mood swings. Plus chemopause ain't helpin either!!! I spotted for two days last week. Just enough to be aggravating!
Jane......I wouldn't think it would hurt a thing to use Nair on your head. Heck you know if you can handle perm solution on your head........that's not nearly as bad as perm solution. Well it is....but you know what I mean. And then some women bleach their hair. Your underarms are more sensitive than your scalp would be I would think. I wouldn't care at all to use it.......I just never thought of it!
I saw my Dr. today......and everything was good. My tumor is still shrinking. He and I discussed the NeuBLASTA (love that) shot too. He wants me to try it one more round.......to see if I get the same reaction I had last time when I ended up in the ER. He said if I did.......he wouldn't give it to me anymore........and that we would check my white cells in 10 days and if they had dropped too low......he would give me a Neupogen shot every day til it came back up.
He was very upset the ER Dr had not called him when I went that night. He said he WANTED to know if one of his patients was in there. And they should have called........even IF they didn't think it was something serious!!!! So I would say someone's A$$ is gonna get ripped.......
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Genia - Is the Dr giving you a lower dose of the NeuBLASTA???
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Genia...my oncologist made sure that if I EVER went into the ER on the spur of the moment, to make sure that whomever you were seeing knows that you are a cancer patient. Apparently, that makes them all hop to, and call your doc. At least that's what happens here, because, like your doc said...now that ER doc is gonna catch holy hell!
I don't get Neulasta or Neupogen...too many patients have too many side effects, so they give me Leukine every day for ten days after chemo. No serious pain, just tired. It's a whole lot cheaper for the insurance, too... about $2000 per shot.
Happy Halloween!
Robin
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Happy Halloween Girls! The kids are just about to go out trick or treating as it is getting dark here.
"Faith is the most powerful thing of all forces operating in humanity, and when you have it in depth, nothing can get you down, Nothing"
Singapore Chris
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Juli........he said there is only one dose and it's pre-packaged in 6 mg. So there's no way he could cut it down some. He doesn't think that is why I felt so bad. But now I'm scared to take it again........cause I honestly thought I was gonna kick the bucket!!! But I don't want to take a chance on my white cells dropping. Especially this time of year with all the colds and flu going around.
Robin.......I DID tell them I was a cancer patient. And I was taking chemo........so they knew. I think that's the reason that little Doggie Howser Dr. will get his little boppy butt in trouble. There's no way an ER Dr. knows enough about the side effects of ANY cancer treatment to making that call without talkin to the Oncologist!!!! If I ever have to go again.........you can bet I will INSIST they call my Dr. which is what I should have done to begin with.
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Genia
NeuBLASTA, LOL LOL LOL.
Oh boy, I hope it is a different experience for you this time!!!
Springtime...
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Spring.....I think it was Donna that came up with that one. I cracked up too when I read that. Someone else calls it the NeuNASTY shot!!!! Both of them describe it well, I think..........lolol
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hey ladies! Springtime hang in there. Keep the faith and I KNOW you will overcome.
I had the last of the three FEC's yesterday despite still having a little cold and lots of cough left. He also said my counts were staying up so well that i dont have to come back Thursday to have them checked. SO in three weeks we are moving on to 3 taxotere's So i am officailly HALFWAY!! That's the first little milestone. He sounded encouraged yesterday and was very glad to hear i had not been overly sick with the FEC. 4-5 days in three weeks isn't SOOO bad..and it's not huge sick just icky..He promises me i will not have that icky feeling with taxotere...we'll see
Have a great weekend ladies. You guys are a big support!
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Hey ya'll! Happy Halloween!!
Genia, I'm sorry to hear that you had a bad week.
Hang in there girl.. remember, this is only for a season! {{{{Hugs}}}}The rest of ya-- Glad ya'll are doing well! I know I haven't been posting, but I HAVE been reading.
Jane-- Good luck today going commando!! I know if I were in the office when you walked in, it would really lift my spirits! So, Booya! to you!
I had my LGFB class this week. It went okay. Unfortunately, the leader didn't have kits in the right colors for everyone, so left after showing the video to get more and didn't get back until after all those that had theirs left. (I had to wait. :P)
However, there was one lady there that my heart really went out to. She had just been recently diagnosed and weeped the whole class.
She was also scheduled for surgery (double mast with expander placement) in two days. She was convinced she was going to be deformed. (her doc/PS hadn't even showed her any before and afters! O-O) We tried to encourage her, but I'm not sure how much it helped. *sigh*I'm so thankful for this site and you ladies. I learned SO much here, and the support has been incredible. I believe that it's better to go into things with your eyes open, yanno?
Our church has 'Night of Light' tonight, so hubby and I will be manning the Human Bowling. Fun times!
Much love!
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Hi All, TGIF!
NeuBLASTA is still cracking me up, and I don't even feel SE's from it. I must be glad it's Friday.
You know, today I was thinking, being Halloween and all, I could go out with "bald" a part of a costume. I won't do it, but the possibilities are endless!!!
Springtime 0 -
DD did my head this morning before she went to school. I had appts at both the onc and BS office today. The girls in the onc office thought it was a hoot. My onc nurse took a pic to share with other cancer patients. The only patient I saw there was a man. Then I went to the surgeon's office. When I was in the waiting room, another woman who was obviously going through chemo also came in. She loved the head. I got a chance to talk to her about how a cancer diagnosis is not a death sentence and it's ok to be who we are. (How I became this person, I don't know. A month ago, I was trying to figure out how I could keep my wig on 24/7, even while I was sleeping) If the only person I touched today was this woman, then it was worth it. My DD took pics and I will post them as soon as she loads them onto my computer. I've already washed my head, so hubby will never have to see it.
Oncologist is re-starting chemo on November 7th. I never thought there would come a day when I would look forward to chemo but, given the alternative of waiting, I'll take the chemo. He did say that I don't have to start over from scratch. Right now, the plan is to do the next 2 AC and then begin the Taxol the Monday after Thanksgiving. If nothing catastrophic happens, I will be done on January 12. Then I get a month off before I start rads in February.
Surgeon did a little debridement and said that the wound looks ok. I will still need 2X a day dressing changes and will still need a visiting nurse to come every day, which means I am still basically confined to my house. I see her again next Friday after my chemo. I asked her how long she thought it would take for the wound to heal and she said she didn't think it would be healed until Christmas...I guess that puts getting a prosthesis on hold. Then again, she doesn't even know when I will be able to wear a regular bra again. Before this all happened, I was wearing a regular bra with a gauze sponge and shoulder pad in the mast side and it looked ok.
Can anybody say MALPRACTICE? I called an atty yesterday and he called back while I was gone. I called him back and I am waiting for him to call me again. I will see if he thinks I have a case against the dentist and I will go from there. I can't believe this dentist thinks he did nothing wrong.
Hope you all have a nice weekend. I'm sure I'll be talking to y'all again real soon.
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I had AC #3 today. The nurses were all dressed in their jammies. My shirt says "Witches Broom Cafe. What's Your Poison?" I thought that was appropriate. haha
I got Emend this time. Anyone take Emend and Kytril at the same time. That's what the onc told me to do. Sounds like too much anti-nausea meds to me.
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