March 2011 chemo-lounge
Comments
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Can I just say I love all of your words of wisdom ladies? I love everyone's views of what they are going to do next and how they are getting through this. I love the "would you like a beer to go along with that" Divine! LOL! Sometimes I think I need something stronger like a shot but I don't even drink shots!!!
I feel like for now I have been so fixated on the "treatment" and I have not taken time to deal with my head and all of my scary thoughts. Can anyone relate? I feel like the $hit is going to hit the fan after I get my exchange surgery and I am really going to have a hard time accepting all that has happened in the last 6 months. I know some of you still have surgery and rads, but I started this process the first week of December. It's like the last 6 months have been so slow, but have gone by so fast. So much has happened....it's hard to grasp. I feel like a different person and just can't feel the same way about things again...I can't be the person I was before all of this. I have not read the Crazy Sexy Cancer book....maybe I should check that out. I feel like the things I worried about before (finances, work, family drama, etc...) just don't matter....all that matters is me, my DH and son all being together, happy and healthy...the rest will follow. I am feeling some stress over my changed attitude about work and such though. I have always been an independent hard working career gal. Now I feel like I am "dumping" the whole financial responsibility on my DH. We were suppose to be in this together.....now it's all different. I hope DH does not resent me for becoming so different after all of this.....I worry about that sometimes. He seems OK with all the changes but I know he feels the stress of all the job change/move stuff. I am supporting him in every way I can....looking for jobs for him online, helping him prep for interviews and talking through his stress and concerns. I know he just wants to take care of me down deep inside but it makes me feel like I am dumping things on him.......he has never said that, but I feel bad. I guess that is something I need to work through too. I am glad that he has some new good job opportunities too. One looks super promising...and a promotion. I know he is excited about furthering his career.....I am taking a deep breath and hoping all falls into place ok. So many life changes...am I crazy???
Timerdog: Glad you are finished! Celebrating by passing down a tall, cold, drink of your choice girl. Cheers!
Supersally: Today's the day! Get it done girl! Let me know what you want to drink for your toast!!!
Divine: I do sometimes feel "weak" or different. I felt so independend and invincible before all of this. The dx has shaken that....I too am getting use to having people take care of me. The whole quitting of the job thing will be a biggy for me. I have always worked FT and made a good income. It will feel odd to have DH just "take care" of me financially. I also feel like I spend so much time convincing everyone else around me how "OK" I am but inside there are scary thoughts that creep in that I can't tell anyone about...that makes me feel a bit weak.
Silia: I agree with doing what I "choose to do". Now I take time to evaluate things more and choose meaningful things.....Good luck on your next treatment. I hope that goes easier. You are pushing through this and getting through it.....hang on to that girl!
Penny: You are so right about "doing happy" and focusing that on others too. I just want each day to be bright and happy and full of good things for those that I love. Boy life has a different meaning after all of this. I don't think what you said sounds sugary.....I like it!
Kristy: 4 more days til school is out! Hang on! THe summer will be yours!
SueBee: I am glad the taxol is a bit easier. That is a relief. Have you tried the claritin for bone pain? It worked for me. I took it on the neulasta shot day and for about 4 more days following with a bit of aleve. I had success with that.....maybe it's an option. I know you still have a long road...you will get through it though. Sometimes I can't believe it's been 6 months for me....it seems like it went so fast in some ways. Just know that every day you get up and get through, you are ONE DAY CLOSER to getting done with this......keep pushing on and you will be there before you know it. I can relate on the eyebrows....mine are thinning. I have to check them each morning too. I wonder now that I am done how long it will take for hair to start growing. I hope they hang on until the growth starts. For now it's not noticable when I pencil in as I have enough hair that they look real. DH can't notice.....crossing fingers they hang on.
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It's funny to see how this thread has evolved. Started with people being very scared and just focused on getting through each chemo treatment day to day with side effects. Now people are looking on moving on with their lives and making all kinds of changes for the better. I can't believe how far we've come. You people are really inspiring.
Suebee, you're not the only one in that situation here. I am pretty much in the exact same spot as you. Had my first taxol on Monday. Surgery is scheduled for July 27. Then I still have radiation and Herceptin to go for a year. Not sure of my staging either. I know I have some lymph nodes involved, but I guess after surgery will have more definitive info. Sorry to hear about the biopsy on your shoulder, it is great that they don't think it's related though. Take it one day at a time and we'll get there too.
Very happy for you SuperSally and TimerDog. Playing Boz Scaggs It's Over again in your honor. And your's too Krist for the end of the school year. That has to feel great.
Have a great day everyone. Love reading your thoughts on the future.
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Hi gang -
I'm feeling a bit euphoric today and don't feel like working 'cause I'm feeling so good. It's understandable but I probably need to exert a little self-discipline!!
Penny - LOVE your post. I'm slowly reading a book right now which espouses much of the same philosophy. (Reading slowly because there are assignments that I want to do.) It's called Life is a Verb by Patti Digh. Premise is what would you do if you only have 37 days to live? That's not the case but it walks through regular everyday things that enhance life. Anyway mentioning it in case anyone here wants to check it out.
Suebee48 & Kay - I'm also in the boat of needing surgery (and probably rads) post chemo. Ugh. BUT I keep saying to myself "I was so scared of chemo and I'm getting through it. It will be the same for the rest of it." So I also don't really know my stage. Re: the question re: do they tell us the odds, I've heard (and it makes great sense to me) that we shouldn't look at the stats because they are always 5 years old and since they are making headway constantly, we would hear stats that are more negative than the reality.
Maria - LOVE the "one day closer" perspective. I've already written it on a Post-It and put on my computer screen. I agree that it may only truly HIT US once we stop with all the busy doc and treatment appts. I encourage you to not feel stress about your DH's job situation. You being healthy and being ther for your family is huge and that's what really matters (as you know!)
To anyone weighing in that I haven't mentioned, thanks for all the updates. It's so great to have an active lounge.
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Good Afternoon ladies,
wow I had a couple of pages to get through, amazing what all of us have already been through and are still reaching towards. I go for treatment # 4 tomorrow, seems like yesterday I was on here freaked out about loosing my hair lol. I still havent lost eyebrows,eyelashes or my darn period as of yet. I am switching to doxotaxol tomorrow I sure hope its easier than FEC. I had so many side effects with FEC, nausea, throwing up, deep depression sheesh. I am going to get some claritin as one of the side effects for this is the bone pain. I am assuming it is very similiar to the taxol you have all seemed to swithc too. Must just be a canadian thing I guess. I have promised myself no decision making during this time. I truly have crazy brain lol I write it on my calendar for the 8 days following treatment to remind myself that my thoughts are a result of the chemicals in my brain so I write Crazy day #1 Crazy day #2 and so on lol just to get me through and I can count them down till I mostly return to normal. Does anyone else find they just cry more and everything is so hyper sensitive I am a walking PMS vessel let me tell you lol.
I have Rads after this too but I am not too worried about that part of this journey. Yes it takes up alot of time but its short and shouldnt be too bad as far as SE go.Heres Hoping.
Ok well I am at work and lunch break is over so I will check in and let you all know how the SE are with the big switch.
Hugs and love to all you ladies
Kymn
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Maria- someone recommended a book to me called "Picking Up the Pieces"(Moving Forward After Surviving Cancer". It's been very helpful even though I haven't reached the "after" stage yet. I know what you mean about feeling "weak". I have always worked full-time even as a mother of 3. Even though I was always the last one home by 2 hours, I always opened the door to "what's for dinner?" times 4. My husband had never cooked a meal in his life and now he cooks and does groceries. We laugh because he'll call me from the grocery store and ask what aisle such and such is on. I have always brought in 50% of the income and now I have cut my hours in half, forcing him to do overtime at a job he hates. Plus at home with the kids, i was always "bad cop", and now they're on easy street with "good cop" in control. Letting go of control has been almost harder than the treatment for me. But I think, for me, it has been a good lesson learned. I have been using the Claritan, can't imagine what the pain would be like without it!
TheDivineMrsM-Thanks for your words of wisdom; they are SO true
KayfromPhilly-One day at a time is truly the only way to keep sane, isn't it?
Silia-I never thought about the "odds" in that way, but you are right. There are advancements every day and I will keep this in mind when that monster rears it's ugly head
Just back from work and am exhausted. But as my bff(whom I work with) says, I don't act sick or unhealthy so people have a hard time remembering not to dump there crap on me. And being me, I would rather just rise to the occasion, even when I have a whiny 20-something year old telling me she can't possibly do her job because she has a cold and couldn't sleep. I'd rather just do her job and mine than admit that I feel crap because I'm anemic or remind anyone that I am going through chemo. Go big or go home...lol!!
Have a great evening everyone,
Sue
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Poll Question re: "rocking the bald" -
Up till now, I have only gone outside with my wig on. I am toying with going bald when the weather warms up for good. It might be freeing to just be bald at times. I'm curious how many of you have gone out bald and if so, what your experience has been. My dp fears that people will gawk and it will be upsetting for both of us. I'm thinking that is the least of my concerns -- I'm dealing with cancer, chemo, surgery, etc. Anyway, I welcome any comments!
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I have gone bald at private social events - gatherings where I know at least half the people, and at any of my family's houses. I will not bother putting a hat on in the front garden of the house etc, and I tend to take my hat/scarf off when driving.
I have only worn a wig twice anyway as it annoys me and Perth is Hot so I have used hats/scarves.
I have not had the nerve to go into work or just out to the shops bald. I think it worries our partners more than us though, my DH said "Are you going out like that?" when I opened the front door to get the paper the first time. I find people look anyway when you are wearing headscarves. Maybe try it once when you are feeling really strong - and let us know how you go
Penny
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Went to my daughter's chorus concert the other night. Had a hat on. We were leaving when it was over. I was rushing to the car because all hundred kids and their families were leaving at the same time. It was hot in the auditorium and I was sweating under the hat. When I got in the car, I started out and was in a long line of cars exiting. I had enough of the sweating, hot head. I took the hat off. My 13 y.o. daughter screamed, "Mom, not on school property!!!!!" LOL It was 9:30 at night, very dark out, no one could see inside our car. I think it worries our kids even more than us or our partners.
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I would love to rock the bald outside but have not had the nerve. I think my kids would be mortified, but it might be a good lesson for them. I cannot see going to the beach with any hat or wig on my head, so maybe that will be my first foray into baldness outdoors.
Every day, I get home from work, take off my hat and announce "Ah, sweet freedom!" My DH thinks it's hilarious. By the way, he would be completely supportive of me going out bald. Maybe when it's really hot.
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Actually - what Maxine said reminded me - I have done public bald several times - all at the beach, seems a bit different there though from in the city, felt quite normal.
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LOL - had to do a quick edit on the last post - mistyped public!
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Those who can rock the bald, especially in public, I am envious of you. A couple reasons I won't:
1) I would not feel attractive enough.
2) My baldness makes me appear sickly and older which I don't like
3) It draws too much attention that hey, this woman must have cancer so I am going to treat her differently. I mean, people would treat me kindly, but I don't want that just because they're aware I'm going thru some illness. Treat me kindly because you should, not because of a cancer diagnosis.
Around the house I often wear a cap, so comfy. The only time I wear just a cap outside the house is when I go for my chemo treatments. Other than that, to work and in public I wear a wig. When I do, many people who know me forget its a wig and I like that. So its like I can escape the cancer thing for awhile. Some people don't even know its a wig. I like the normalness of that.
Losing my hair was not the big deal for me like it is for many women. But I CANNOT wait till it grows back.
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HELP!!!!
Whatis the quickest cure for Constipation? Too imptient to go back thru this whole thing. have never been constipated in my life. I don't care if it's gut wrenching I just need this stuff to move!!
Woe is me-what a pantywaist-everybody else is finishing and I am having my first real SE!!
Have tried Milk of Mag, prune juice, prunes, tons of water, hot bath and walking
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RE:Constipation - somewhere on these boards I read 6 dried apricots and activia daily. Worked for me but I decrease the # of dried apricots as I get further from chemo days and also when there are signs that I can/should.
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Senokot with stool softener - it's over the counter at the drug store. Constipation isn't so much gut busting as anus busting ( sorry to be gross). If you can avoid pushing (I know it's difficult), you may avoid hemorrhoids which I think of as the gift that keeps on giving. Be careful because sometimes the pendulum swings too far and you can end up with diarrhea. Good luck for getting back on track, lilylady.
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During chemo 1 I had really bad constipation - tried prune juice, apricots etc - didnt work
Then try Coloxyl and Senna (should be over the counter) - didnt work that time but does now as I take it earlyThen if all that fails for fairly quick results - Movicol - you may need to get a prescription but you could try calling the pharmacy first and see if you can get it over the counter. Read the instructions because you can take 1 or more sachets, should work within an hour or so. Then keep sachets of it in case you get it again.
I know how you feel its horrible!
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Mix some coleslaw dressing with a bag of shredded cabbage and eat it, that was very effective for me.
Eat Activia several times a day. And brocolli. And a banana or two. Sometimes I think those prunes/apricots do not have enough roughage to push thru the intestines. That cabbage and brocolli has bulk and won't want to stick around long and will be pushing to get out.
I also prefer Philips Stool Softener liquid gels better than the Senekot. It worked better yet was easier on my body. Let gas and less cramping and more economical. You can take it any time but probably is most effective when taken at bedtime. I always start takining them the night before chemo and then for the next five days or so. And a note: this is a stool softener and not a laxative, and I found it one of the best tools to help ease constipation.
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I got it bad with my surgery and my first chemo. From then on I started taking Senokot S in the morning (2 pills) and a stool softener in the evening (2 pills). I would take it on the day of chemo and for about 4-5 days post chemo just in case. That seemed to work and I did not really have issues for the other chemos. The first time when I got it - it was so bad I sent DH to the store for an enema but they say not to do that during chemo (I didn't know that at the time and did it because I was in agony).
I hope everything comes out OK (literally)...I know how horrible this is! And for those of you that have not had surgery yet......it happens with surgery so be prepared and as soon as you get into recovery ask for stool softeners!!!!
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Hope you have gotten relief Lilylady. I take Senna a laxative at night and a stool softener Colace in the morning and at night to keep the constipation in check. It does then usually turn into diarrhea. What a cycle! I hope I will be back to normal once I am finished this. I do believe it is the most unpleasant of all the side effects.
I have a question on Taxol. I was getting too confident with it I guess. Today I started getting bone pain, and it is pretty bad. Is there anything I can do to prevent it before the next Taxol? Does Claritan help with Taxol the way it does with Neulasta?
Thanks for the help.
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Thanks for all the weighing in on "to bald or not to bald". Divine Mrs. M - I think you're beautiful and would be even without your hair but I completely respect that if you were feeling that you didnt look good, that wouldn't be any fun. I don't know if/when I'll go out bald. Guess I'll just keep toying with the idea!
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Hey all,
Quick check in. Got my neulasta shot this morning and slept most of the afternoon. Was awake most of the night with terrible night sweats, ugh. Woke up soaking wet! I'm so happy to be done, wish I felt more like celebrating, but that will come.
I have fought constipation with surgery and each chemo. I rake senekot s at night, stool softener in am and try to eat fiber. Last time it was better probably because I ate more fiber. I'm drinking lots, too. Hope you got some relief Lilylady.
I'll check in again soon. Mom is here, cooking dinner, so nice to have her here0 -
Hi ladies.Wanted to pop on and say I hope noone is dealing with side effects to bad. For constipation I also took a stool softner every other day and tried to eat activia alot of fruits and veggies. Have not had any constipation with the taxol/herceptin . I will be done with this the 1st week of July. Was told Tues. the subaru we bought for 5000.00 on 4/6 has blown motor. Yea just what we need now. It has been in garage since 4/27 to find this out. Pretty sure car lot is only liable for 20%. Motor we found will be 1100. plus labor of 500. Might pull that much out of my hat, ha. Have been so down about it. We may be paying for a car to sit. Money has been to tight since I have been diagnosed. Have been using my Moms truck to go to ohio 333 miles round trip. Rest of week unless DH is home on weekend, Im stuck with no vehicle. I know it seems mild to what we are all facing. Just a big worry is all. Sorry to vent to you my problems so. Hope everyone has a nice sunny cheerful weekend. Kymn sorry you are havi such a rough time, I as well have many days I sit and cry over little things have done alot of that this week,. ha.0
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lilylady
ok, not even going to beat around the bush about this.
I had 3 rounds so bad I was on the verge of going to the hospital for impaction each time (the longer it goes on, the more it turns to cement). problem with laxatives once you're already struggling it doesn't soften what's at the end of the pipeline but does turn newer stuff into diarrhea (it's like setting up road construction then sending a parade down the same street. I don't recommend).
Try an enema to loosen. Mineral oil enemas seem to help hardened stool make it's way out. So do glycerine suppositories (that was a fun trip to the drugstore). Also look up removal of impaction online (won't get into details).
I ended up at the protologist (if you really want to make chemo a treat, add a side of anal fissure). She told me no laxative (they get your intestine "hooked") but colase to pull water into the stool. A friend who is waiting for a new heart (lasix really constipates) said aloe juice is even better. this seems to be a good "maintenance" strategy.
Don't wait too long, it can be dangerous. I was so surprised how miserable this made me on top of it all. It kind of puts you in a panic. Keep it movin'!
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Divine Mrs M
I kinda don't mind the bald look. And nice as it is, I HATE wearing my wig.
But I agree, that I just feel too conspicuous going out bald. It either screams "I HAVE CANCER" or that I'm making some sort of statement...whatever that might be.
As soon as I have some hair, I'll probably go public, even if it's just a crewcut. At least it says I'm healthy enough to grow hair, not "sick." It's so hard for my job, I feel like people (especially men) when they find out I have BC, think I'm either dying or will always be sick. A bald head doesn't help. And I need to work...I'm a freelancer and getting work is all about perception unfortunately. I hate getting nervous about who friends might have told.
But I have been totally bookmarking various short hairstyle and am plotting out my regrowth plan! Did anyone see the finale of America's Next Top Model last night (I am outing my love of that terrible program...you heard it here!)? They cut Brittini's hair super short at the very end and it was adorable. Very inspiring.
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good evening ladies, just had round 4 today,the big switch to doxotaxol. so far just tired and groggy sure hopeing no tummy sickness this go around. As for constipation I have suffered with this my whole life. I have tried all over the counter meds and prescriptions with very little relief.Then I found at a health food store a product by Renew Life,Cleanse more. There is whole line for a body flush but its the one for colon support. I will never be with out it again. Honest it is the most amazing thing ever for me anyhow. Might want to give it a try.
ok back to the couch hopefully will wake up feeling ok, praying for no bone pain.
Hugs to all
Kymn
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After surgery, I became very constipated. I, too had to resort to an enema. It was the only way to go.(pun intended) Now, I take Senecot the day of, and 2 days after treatment. I had to learn not to over do it and end up with diarrhea and intestinal cramping.
In public, I mostly wear a wig, and most people don't know I'm wearing one. When I wear a scarf or ball cap, strangers look at me with this sad smile on their faces,but I do go out that way sometimes, because it is more comfortable. I just can't bring myself to go out the door bald. In fact I almost always wear something on my head at home. The only time I don't is in bed. I just couldn't make the sleep caps work for me. MrsM, I also wasn't all that upset about loosing my hair, but now I'm ready for it to grow back. I'm afraid it will be along while before it does.
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I mostly wear my beau beau its much more comfortable than my wig and I love my wig but it gets so hot. Havent dont the bald thing yet either dont think I will not that brave yet.
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I lucked out with my wig. I forget that it's on my head. Ya, it can be hot now that the weather is getting warm, but so is my own hair. I've always complained that it's like wearing a fur hat. Now I'm really wearing a fur hat and it's no different. At least I can take it off at home which I never could before!
I'm with MsM and don't go out much without the wig. It's is pretty darned close to my regular colour and cut, so people who haven't seen me a while have no clue. I don't have to have the cancer conversation unless I choose to.
I do wear a Buff to the gym because I don't want my hair flying away (Squirrel!!) and I don't want to be washing my hair all the time. There's a guy at the gym who's a Dr. I only know that because recognize him from the local hospital. He's never noticed me before but suddenly I'm on his radar. I can sense other people eying me when I go to the gym. It's only because of the cancer hat.
There was a bald woman at chemo last visit who looked awesome. She had a great shaped head and she looked healthy even with no hair. I, OTOH, have a long face which is exaggerated with no hair and my entire head is fish-belly white. Not cute!0 -
Other than the magic mouthwash, what have people done for mouth sores? Is warm salt water good? In the past couple of days my gums are inflamed/swollen and now my tongue is inflamed a bit on that same side. Suggestions appreciated!
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Silia- I use a triple whammy for about a week after chemo that includes salt and baking soda with water, Biotene mouthwas which was recommended by the dentist and the chemo pharmacist, and some very expensive Manuka honey (just a tiny bit gooshed around my mouth.) I can't say which one works the best. I can feel the mouth sores starting but they never actually appear and I have no inflammation. I just alternate between the three a few times a day.
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