August 2015 Chemo Group
Comments
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Thanks for your kind words Mom2Aboy. I need all the reassurance I can get.
Rosieo
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HA! I got jury duty, too! which I promptly reply, "sorry, doing chemo!" Totally know what you are saying about the emotional part...
My usually reserved, introvert "not well-defined-relationship-status" friend hasn't been dealing well with my chemo <world's biggest worry wart>. Yet at the same time, he has been more open to affection & smiles & stuff.
He makes me want to 1) ignore him, pretend everything's normal, 2) yell at him, "What the hack do you want! why now!" 3) worry about him....
How's everyone's S/O doing emotionally with your chemo?
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Regarding significant others dealing with our cancer: My husband is wonderful: kind, loving, compassionate. When I ask him how is is dealing with my chemo, he gives the pat answer, "I love you; this is to make you well." We are retired, but he was a business-y "suit" and always needed to be in complete control over his emotions. So, I really don't know how he is handling this. I think I'm avoiding the emotional talks with him, so he avoids them. I remember when my mom was going through chemo a couple years ago, and I would find myself staring at her poor little bald head and my heart aching for her while I tried to put on a positive face. Sometimes I wonder if my husband is taking that path alone, too.
Superius, Open to more open to smiles and affection is a good thing. It sounds to me like your "not-very-well-defined-relationship status" is evolving. I can see why you are hesitant, though. No one wants attention just out of pity. I feel that so much of my life is just in a holding pattern, or on a treadmill running in place. I'm finding that my goals have become short-sighted, like "get through chemo." I'm sure our SO's are struggling with this, too.
Mrs Brompton, At first I thought I was playing the cancer card, too, and then I realized that this is a HUGE stress on all of us.
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My S/O is incredible, through and through. I'm a very, very lucky woman. Spouses DO go through it, too, albeit differently. I was just telling my mom the other day that, if given the choice, I would do this rather than watch someone--anyone--I love suffer. It's hard on most loved ones, I think, and a part of why I consider myself so lucky is because my S/O and I have a very open, communicative, relationship, so we try to talk about how we feel in a frank and honest way.
Re: the cancer card--my BFF (who has been oscillating between being overbearing, distant, silent, and hilarious) suggested that I go as the cancer card for Halloween. She had this idea where I'd use poster board to make something that looks like a playing card, rock my bald head, and say I'm "playing the cancer card." Free drinks, perhaps--too bad I'm not really drinking!
Honestly? This is hard-core stuff. We all deal with it differently, but if I can think of one time in my life when I'd play ANY card, it's now. I really haven't, so far (other than having some classrooms moved around at work and being honest about the fact that, for the first time in my career, I may have to cancel a couple of classes), but I certainly would if I got called for jury duty right now. . . .
Also, Sloan, yes to the mood swings, especially the first 10 days or so after treatment. I'm completely unpredictable! I blame it on 1) decadron (shocker there, I know), 2) chemopause, and 3) the stress of this whole ordeal.
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@Kate I totally laughed out loud at that. On the iPad. Wil tap the keys later.
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My scalp is dry. Anyone's doc suggest putting something on it?
Kate - Like the cancer card idea! Hey, October is BC Awareness Month; just wrap yourself in a pink ribbon. haha Going as a kewpie doll would be cute if anyone still had a little tuft of hair on the top of the head. With my hair, my costume would be more like a scary movie doll with patchy hair.
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Oh my. What a day. I had an H-only infusion and I did not feel well. I was crying when I got to the infusion center which made the check-in lady cry. She hugged me while I sobbed. Then she took my stats and walked me to my chair. (Side note: I knew this week was bad but 10lbs bad?! I am now down 18lbs. since cycle 1 day 1.). My nurse took an assessment and wrote down everything I had to say about this week and sent it over to my MO. He is switching me from Taxotere to Taxol. That is all I know. I am hoping he'll cut back on the Carbo too. Now to research how the two taxanes differ... I had two other nurses who know me by name come over and want the full story. I talked to one but the other is a fun friendly gal and I avoided a third run-through by talking dogs with her. She makes me laugh and I needed that!
I finally got my entire diagnosis, I think. All I knew before was I am triple positive, Stage 2, Grade 2. The nurse wrote down: infiltrating duct, ER 70%, PR 10%, Ki-67 80%, HER 2 2+ Fish 9.5. Am I missing any info? (Now to go learn what that all means.)
Superius, I have to say I enjoy your friend updates. It's become quite tantalizing! What will he do next? Does he? Doesn't he? Will she clobber him over the head?
My DH has been amazing, but the stress is wearing on him. He is not sleeping well and worried all the time. Insurance paid for both BRACA tests but is denying the third genetic panel--$6,000! We have other medical bills coming in, but I know MORE than my deductible has gone out--these are old bills, all the new stuff is being covered, but it's still a mess to sort out. On top of that, work has suddenly dried up which is a new thing for us. Always a possibility when self-employed, but hasn't ever really happened before. But he has stepped up in our relationship and is taking care of me and the boys--I am more concerned about him taking care of him... He is handling all the medical/billing stuff, running errands, schooling the kids, bringing me anything I need, and just being Mr. Mom! I truly adore him! Now my children on the otherhand... Anyone else have young ones acting out?
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Sloan15, a volunteer at my infusion center recommended Moroccan Oil for the head.
I am curious what all we come up with for Halloween. This is my DH's pick:
http://vignette2.wikia.nocookie.net/memoryalpha/images/6/67/Ilia_probe.jpg/revision/latest?cb=20090531060014&path-prefix=en
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Muso, Awesome costume idea, but for those on the Taxan the question is-- will we have lashes?
I really am hoping for better days for you. It sounds like you have the most supportive team there at the center, your MO is tuned in, and you have us.
re the Morrocan oil, I used it for the first bit, but the smell is too much for me to take after a while. I'm using un-scented Aveeno. It seems to be working well. I used it all over.
** side note, I was told by the hair dresser, only conditioner on the scalp if I was going to use any hair products because shampoo is made to take dirt off of the hair. He recommended just rinsing the scalp, no soap or cleanser, and then conditioner or moisturizer. Made sense at the time. That's what they told us at the look good feel better clinic too.
Best,
Nikki
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Molliefish, Bummer! That costume really won't work right without good lashes and brows! So far my lashes have stayed but my brows are thinning. And that's two cycles out...
I really was overwhelmed by my nurses today! They were on it! And got all the info to my MO since I wasn't scheduled to see him. When I told them I had wanted to quit but was hoping we could change my meds next cycle instead they jumped on it! They really want a cure for us.
I haven't tried the Moroccan oil, just wrote down the suggestion, but have used my Aveeno body wash on my head. Didn't think to try conditioner or lotion. Still trying to find hormone/paraben free stuff. (Was told to check out Ann Webb, Andalou, and Nubian Heritage.)0 -
Musosgirl, my husband liked that costume, too!
I'm going to try aloe gel on my head. I read about aloe or olive oil on the scalp (snd tea tree oil?) but I don't want to smell like oil. I'm Italian. I don't want to smell like dinner!
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Sloan-I use coconut oil on my prickly head. Dam hair wants to fall out and then continues to grow.(cancer you are a real bitch). I have also used he oil on other body parts(the ones down there if you know what I mean)that were giving me some problems and it worked well. It is a natural oil and it doesn't seem to clog my pores.
My husband has been awesome as well as my daughters. They seem to be taking it in stride and know when to pick up the slack. It is my best friend of 30 years that I am struggling with. I had some friends over the night I shaved my head. We made a party of it....made the best of a bad situation. Well she couldn't come because it was too hard for her.....uhm well put yourself in my shoes.....it was so fun and easy for me.....NOT! My husband bumped into her yesterday and he said she was super uncomfortable. He didn't make the conversation easy for her. I figured she would contact me after that. She didn't.....I have been waking up in the middle of the night and I think of all the things I want to say to her. So I sent her a message today. Telling her how much I missed her, and because I had no hair, I'm still me. She has had lots of loss in her life and she is scared she is going to lose me. I am not going anywhere.....I am winning this fight. So now I wait to see If she responds.
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I lost (the friendship--not her/life!) my closest friend when I was pregnant and going through my original trauma. Lost the next one when I was diagnosed with PTSD. My best friend from high school has completely freaked out over the BC, but he is coming to visit me! He refuses to come home unless he HAS to--I visited him in NY for the first time ever (he's been there 13? years) in April for his birthday, SO FUN!!--and he just decided to come for Halloween and hang with me through a big infusion and bring his nieces over my 'hood for trick or treat. You just never know how people will respond. I didn't have any help when pregnant or mentally ill, and now people are bringing dinners, giving giftcards, referring me for house cleanings... I think cancer is a more "acceptable" illness in that people "know" it better. But it hurts SO much when the person you really want to talk to has cut you off when you most need them. I mean I love my husband and all, but sometimes you just need that one girlfriend. It's been 8 years since that first friend would talk (at least civilily) to me, and I still miss her. I am intentionally focusing on the new people in my life who have really stepped up and am saying "yes" whenever I can to those who choose me.0
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DeeRatz, Musogirl - how awful to lose friends over this. I've lost one or two - people who leant on me because I was strong, and now they're anxious because they think I can't be strong for them any more.
But hey, we ALL have friends who have been so brilliant. Like the friend who sent me a two-word email after I got diagnosed: "Oh, crap", and has been a fantastic source of humour and practical support all through.
Also, we all have no choice. We can't walk away from this. Weak friends can. Can't wait to see the 'cancer card' party costume :-).
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Hey ladies just popping in to see now everyone is doing... I have one more week in my upswing till the next (3rd) round of TCH. That will make half way done. As long as everything goes to schedule. The incision is still open, it does not look infected at all and its getting looked at this week to be certain but the stubborn thing won't give up and close already lol. I still have quite a bit of hair, not enough to go without a hat but its a good amount of duckling fur lol. Its so soft. It does not come out easy when I do the hand through it check either... but I am sure these 4 rounds will take care of that. My scalp hurt when it started falling out but only for a week or so.
S/E wise I am alright... My nasal membranes seem to be drying up and I have a weird sunburn like rash on my hands and some little scabs where I was either clumsy (chemo fog is real and in da house lol) or its another side effect. My roid or fissure is much improved, I still know its there but no bleeding for quite a while. I have not have an weird taste or food aversions but looking at food can turn my stomach lol... but I still can eat my chipolte the 2nd and 3rd up swing week. So thats good...
I am starting to get worried about the neuropathy and my docs view seems to be suck it up... No real advise on anyway to prevent it. Just power through and deal with permanent things when its all done. The feet were numb for 11 days, they feel better now and the first round they went back to normal but I am worried it will get longer and longer and by the 6th be more of a permanent issue... All the other SE's are mild. Just an annoyance but this issue is going to be my big whammy I guess... There is no tingling or anything, they are just numb. like I have tight numbing socks on....
Wondering if round 3 will be much like 1 and 2 or if my house of cards will collapse and it will be really bad... Stinks no knowing exactly what to expect. Hopefully the doc is nonchalant about the numb feet because it goes away by the next round (hopefully, its decreasing now after round 2 but not yet gone).... Seems like I am always looking around or waiting for a shoe to drop... I also hate that first week after infusion. It messes with me more mentally than physically. The steroids make me close my eyes and see like a book vigorously turning pages, like the pages of my life and I cannot stop it (I see this actual image) and I am all shakey and jittery. Then I feel sorry for myself and repeat over over this sucks look at the calendar and see how much is still left then when I feel better its ok, that first week-10 days just stinks though... hoping that suckage period does not increase as it get more rounds. I also been pretty irritable lately. Luckily I say most of the things inside my head because I recognize its what it is lol... Doing HW with my son was a real chore...
Hope everyone is feeling better, hope lots are getting close to done... I know some schedules could be near finishing up, not me though I am in it til Dec lol but were all making it so far. Heres to no SE's for everyone
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Musosgirl, you made me laugh! yeah... what is he going to say or do next (nothing yet). It's going to take us 2 introverts lots of work & lots of time to figure this out. I know we both can't wait to finish with the chemo. This past 2 weeks has been dragging too slowly..... The other day, he said, "are you done already?" "I told you last week 9/28" which he replied, "oh right..."
Sloan & Kate, Thanks for what you are telling me... I definitely have seen him putting on a "happy face" in front of me, then worrying when talking to our doctor friends. I never have something like this before, so it's all new to me... (& freaking out a little bit)
~
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Gooseberry I feel for you on the steroid train. Have had inklings of this. The mental effects are all tied in with the physical/hormonal effects like a bad dose of PMT. My doc says almost everyone gets better from neuropathy but it can take months for some.
Later today I will go back for #8 of 12 chemo sessions. I went for a long walk this morning and stopped by Hampstead Women's Pond. No men allowed, and a great slightly-alternative atmosphere with some women (and some very OLD women - toughies) swimming here all year round. Others just come to eat a picnic. Thought you'd like it. (I didn't swim - though I was tempted to leap in in my underwear!)
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no men allowed, just go buck nekkid Gurl!!
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I'm using vitamin E oil on my head (and scars). It's good stuff!
MsBrompton, I want to go to that place--it's gorgeous.
gooseberry, I hear you, and it looks like you're only a week behind me (halfway done is, I guess, a huge milestone!). . . . TCHP hasn't been nearly as bad as I'd expected. Decadron has been worse than I'd expected. Overall, my SEs (including Chernobyl-nose) have been a lot like yours. My doc said yesterday that it gets easier from here. She had a little gleam in her eye that I couldn't quite read, but I'm going with that for now. 4, 5, and 6 will be nothing, 'cause we're old pros.
She even said that I'm "doing really, really well" with the "big things," so now our mission is to "manage the little things," such as my terrible experiences with the steroids, the gastro-intestinal stuff, and the weird hungover feeling. We actually laughed together about the fact that I've never really even taken medicine before, and now I'm on all kinds of crap to curtail the SEs (pills! pills! more pills!). Here's the good news: the all-kinds-of-crap works, for the most part. If they could come up with something to reduce the leg weakness and the weird hungover feeling, I honestly think I'd feel pretty good. I agree with you, too, about the 2-3 week upswing, which gives me something to look forward to at the beginning of each round.
I had a weird painful stomach thing happen yesterday during my Carboplatin infusion (the last of four bags, go figure). Here's the thing: my nurses and my onc are fabulous. The onc came back to the infusion room, sat with me, watched my response (my BP had gone way up, too, even though my heart rate was my typical resting 55-60 per minute), asked a few questions, and ended up prescribing proton-pump inhibitors that I'm to take until December, when this is all done. I took one last night and, though I know it's supposed to take a week to work, I swear it helped.
It makes a big difference to have a scary-smart doctor who cares and a team of nurses who know their stuff.
She also said no Turkey Tail until I'm done with TCP, but she's fine with it when I start Herceptin-only treatments in December. She's mostly concerned about SEs, and us not knowing what's causing them if I add something new to the mix, but she's willing to let me experiment on myself. Three cheers for good doctors.
I hope you ladies all have a wonderful weekend. I have a million papers to grade, but I can do that from the couch while I watch college football, so that's something.
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Re: significant others. My husband has been amazing and everything I've needed him to be. That said, we have been together since we were 19 and our marriage, especially over the past 8 years has been incredibly rocky. We were separated for about 6 months about 3 years ago. There have been times he has been incredibly unkind to me. And when I've been sick with minor things before, let's been honest, he hadn't been "the king of bedside manor". I think he is using this illness as an opportunity to make up for a lot of things. He feels a lot of guilt for our past. He has been so loving and supportive these past months. Both he and I have openly talked about how surprised we are by his good behavior! I'm falling in love with him all over again, and that had definitely been a silver lining through all of this. That said, I'm also kind of waiting for the other shoe to drop, but I will take it while I can get it.
My loves:
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superius and musosgirl - the cartoon about boyfriends was hilarious! My husband reminded me that I take him on a 4 mi walk everyday when we exercise. Haha
Regarding the cancer card... I also shared the idea of how I (and some others) are pulling the cancer card as part of our stress. He said, "Yes, and you have a right to do that. Use that card whenever you are overwhelmed because your focus right now is not some petty issue, it's cancer. Get out if that stress so you can be positive!"
I'm using that damn card if I need it. Unfortunately, all us us in here are card-carrying members. It doesn't give us a right to be disrespectful or mean, yey it's a reminder to get out of petty stressful events. We can use it overtly or mentally to stay positive. It's like when people start to share stories of relatives with cancer who died... "Uh, positive stories only!" I have to (nicely) tell them!
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Bluefrog- nice family picture. Hopefully this terrible disease experience can bring out the best in all of us. I know all my boys call more often. There's no downside to connecting more often with people who love you. This probably makes you hug a little longer or listen a little more patiently with your young ones, no?
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Good day to all you lovely ladies
Well I am back from having my port put in. No problems, no pain. Have been taking it easy in my recliner and of course reading all the posts. Dr. gave me a script for tylenol with codiene. If it continures as it is now I will not need it. Next to the wig shop tomorrow then to oncologist office on Monday for instructions, I guess, and then, Tuesday is the day.
This problem has kept me so busy,I am stressed :-) I work in Real Estate and have been quite busy the last few weeks. It is a distraction but it also has been stressful trying to get things done and to pretend to my clients that I am as happy as I hope I let them think I am. :-)
Have a beautiful and comfortable to all.
Rosieo
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Bluefrog-You have a beautiful family. Glad your DH is supporting you.
Sloan-I agree with the Cancer card thing as well. Sometimes you just gotta pull it out to cope. I have had to use it as well. 2 weeks post BMX we were out for supper with my mother in law. All she could do was talk about death and dying. People that had died of cancer. I looked her straight in the face and told her the conversation was done. I needed positivity in my life and that I was choosing to live. Our supper was abruptly over. Some people.....ugh.
Roseio-good luck with your infusion on Monday....You got this.....you can do this!
As for my best friend....well I heard back from her....it will be a long time before I see her again. I am sad but I can't make her deal with my cancer,even though she said she has dealt with the fact that I have cancer. She just can't be the friend I need her to be. I am sad but I have such a great support system otherwise. My community and other friends have really stepped up for me and my family. The meals, visits, phone calls and treats have all been amazing. I am just grieving the loss of the one person I thought would be my rock(besides my husband). She is the rock that sunk to the bottom of the lake after being skipped across the water. Her loss.....she is just jealous of my awesome haircut.....
Have a great weekend everyone. Take time to enjoy the small things in life!0 -
Evening Ladies,
Finished round three today, it went pretty much the same as the first two round. Depends on your nurse I suppose. My nurse today didn't warm up the veins in the arm but he sure hit the mark with ease. I was still 3 hours start to finish. Slept through the icing of the fingers and toes. The Benadryl knocks me out. :-)
I noticed a young lady across from me today and I'm curious as to her treatment. I wonder if any of you can assist. She had a port, and she seemed to have similar IV bags to me, but she also received two syringes of meds delivered by her nurse very slowly, that really seemed to upset her stomach and cause some pain.
What kind of chemo is that?
Feeling pretty crappy already tonight. I slept past dinner time so I didn't get my meds until 9. Could be the reason but I'll be toddling off to bed soon.
Take care, Nikki
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I couldn't see the meds in the syringe for sure but I did see the nurse carrying on in the general vicinity and it was clear. What is the IV drip that is orange and covered by a protective grey sleeve?
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Saw my MO today. Will have last TC coming Monday. With the Flu season begins soon, she made me get the flu shot (I never did), just this year. She said my immune should be back to normal 6 weeks afterward. She also said that my period would probably come back in a couple (few?) months. That's fast... I read someone mention "chemopause" is longer. (maybe my age?)
Will start Tamoxifen beginning of Nov. I asked her about tests etc. She said No, because basically there's no clear indication they are helpful in knowing, except giving you bunch of radiations. She said those tests failed to found "clear markers" about re-occurrence, that sometimes people who's cancer came back, had -ve test result/ markers. The main thing is be in tune with my body. if there's anything unusual, report back right away.
Regarding the Tamoxifen, she said with my health, there shouldn't be much problems, most common s/e are hot flushes & discomfort "down there". Will check up on liver function regularly.
She said Tamoxifen is big part of it. Since I have clear margin & 0 lymph node involved, IF there's any cancer cells, Tamoxifen suppress the hormone & those cells are starved to death.
well.. I forgot to ask her about if hair might continue to fall & how much time for them to grow back.... oh well those are minor details compare what she told me.
Ms. Linus.
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So no radiation for you?
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I had Mastectomy, so nothing to radiate on. At least that's what all the doctors said
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Morning sweet ladies! I am FLATTENED after yesterday's chemo.
Today this whole journey seems a very hard climb, so I am looking at this picture my friend sent me of her scaling a cliff in Switzerland. Her partner (also female) is a climbing instructor and encourages her to believe in herself even when she thinks she can't make it. So she is looking up, daunted at how far she has to go but encouraged by her loved one, who is there for her (and has fixed all the ropes just right!) and will meet her at the top.
From your stories I can see that not all of us have strong, perfect partners (mine is strongish and definitely not perfect) but we all have friends who are helping us get to the top. If you're having a hard day/week, hope you take some strength from this picture.
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