Starting chemo July 2014
Comments
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ElaineTherese, while we're getting all gross and stuff, when I think big H I think hemorrhoids.
Along with the the blurry vision, watery eyes.
And you know that itchy feeling after you've had a haircut and you have little tiny hairs all down your back? Yeah, it's like that. I've taken to using the lint roller on my head. Don't laugh, it works, and most of you will want one soon enough.
On the bright side, I have neither big D or big C.
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so my hubby saw me reading these boards last night and asked me, "don't you ever read for fun anymore?" I guess he thinks I spend too much time here. And yes, I told him I do still read for fun, I just finished a book.
Shirley
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u girls are hysterical! Making me laugh. Little pooped on day 3 and I've been running around with soccer kids all day.
For the big C, have you tried prune juice and those fibre powders, starts with an M , forgot name. Worked for me.
SLappy, I hear u, hubby asks me the same thing. I can't help it, I live here or other cancer books. Just finished the crazy sexy's, now starting anti-cancer. Can't help it. It's my life at this moment.
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A lint roller! Brilliant! I've used one on my dog when he's shedding and brushing isn't doing the trick, so why not?
I'm 2 days out and also have the C and the blurry vision, but at least that's it. Well that and being so, so tired. The blur is not too bad, I found it was the worst the day of, towards the end of the treatment. I think it's going away now. Tomorrow I stock up on Colace.Hope you are all feeling ok tonight.
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Dancingdiva, you mean Metamucil? Another thing I was on before BC. My PCP had me take two capsules three times a day to lower triglycerides and I've kept taking it, even with D it's good fiber. Also have continued with rx colace twice a day. Maybe overkill but I'll take it. My mom used to stew prunes, just put in water to cover and simmer until plump. She had some every day. Her generation was certain that if you didn't go every single day you had a blockage. I'm not so...anal. Haha!
Watched movies all evening. Cousin made her wonderful quiche, we'll be eating it for a few days.
Nini ladies!
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actually I checked the bottle finally, it's Benefiber and it doesn't change the texture of foods and u don't taste it. I put it in a lot of my liquids.
My mom is like that about elimination!!! If she doesn't go EVERY single morning before a certain time, her day is ruined!
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My Mom uses Benefiber -- she loves it!
Re: elimination -- my grandmother and I used to have these serious "elimination" conversations when I was a kid -- "Do you BM in the AM or in the PM?" she used to ask. Ugh!
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Looks like I'm going to have to file an appeal for my rotator cuff shoulder physical therapy. I was 5 weeks post op when diagnosed with my breast cancer so the surgery set back my recovery, then the chemo set back my recovery. So I've used up my 30 allowed visits and don't have my full range of motion back. Therapist sent in a request for once a week for another month and it was denied.
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Happy Sunday Morning, ladies. I have a forecast of 27 and sunshine in Toronto (thats 80 degrees Fahrenheit for my friends in the US). I think I may play a wee bit of golf this afternoon! It's my last chance to make hay before the picc insertion tomorrow and round 3 on Thursday (hopefully reaction-free and uneventful for a change).
On the SE's of the week: Runny nose? Check. Blurred vision? Check. Constipation? Check. Here's a new one: folliculitis on the scalp? Check. Happy for shrinking tumours (yay, PinkNinja) and dying cells? Check. Check. Check!!!
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Only on here can we really discuss our BM's without fear of judgment! I'm on the 4th day after my 2nd tx and I'm hoping that the se's will be less than the first round. I'm on the protonix and some catharate (sp?) liquid for the acid indigestion and I think it's helping. I'm also trying to eat foods in small portions so that helps. I've been taking the Claritin and Advil for the bone pain after the Neulasta shot but I'm still having alot of pain but I won't complain because it's keeping my wbc's up.
Last night I pushed myself to go to church and I am so glad I did. It was the first time since I've shaved my head and I only wore a bandana not a wig. It was a little emotional to have so many people come up to me and tell me they are praying for me but I felt truly loved. The message was on encouragement and how to defeat it and I am grateful that I'm doing well in that area. Ask me in a month and who knows, but for now, I am at peace.
By the way, I also love writing and have a blog that I used to write a lot in then I got busy but since my dx I started writing again. If you are interested, Here's the link:
http://redeemed1.wordpress.com/
I have an awesome testimony of how God brought me out of alcohol and drug addiction and you can read all about it there.
Praying for each one of you today that you will find strength and encouragement in the Lord
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Do any of you ladies post on a couple threads? I've also been posting on the Women Older than 60 and on the Lumpectomy thread, had my posts deleted by the moderator this morning for double posting about my insurance denial. Guess I missed the rule about not double posting. So do you have to just pick one thread and stick with that one, or do you have to rewrite your post and say it another way? How many different ways can you see you're weak and wobbly and but glad you don't have bone pain?
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Cycle 2 Day 5 - Good Weekend but CONSTIPATED. So much easier than last time, but because I didn't have the HORRIBLE diarreah last night, I still haven't had a movement since Day 1. I'm terrified to take anything, because who knows, maybe the big D is just waiting to come a day late or something, but I'm also terrified about how painful anything will be that comes out 5 days later. I've done glycerin suppositories and get a few rabbit poops out each time. Should I just keep doing that??? Oh, and did I say, I'm scared because it really has been easy. I'm worried about a delayed 'hit' or that they didn't give me the chemo. I'm such a silly person...
I had replies to many of you, as I was reading through, but... alas, chemo brain, I can't remember your names or my comments. So sorry - Pink, love the Pink wig for fun. Insurance - yuck, vision - yep,
for shaving head, DON'T. I let my kids pull one at a time for a few days, they found it fun, made mustache's, etc. Taped a swatch of hair to paper for each of them. Then finally went into the bathroom, pulled and pulled myself (have a bag, it is lots) and cut what was left to 1 - 2 ", That feels fine on my head. The area I cut short, like 1/8", feels like stubble and hurts. Thank you ladies for being here. BTW, I'm reading the MItford Series by Jan Karon. My mother was raised by Episcopal Nuns, so it is like having her with me. There are bits and pieces of some of my favorite hymns which I have forgotten, and I find myself singing along to them.
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Knmtwins, my MO stressed the point that minimal SEs is not an indication that the chemo isn't working, that the SEs will probably be different each time, and to deal with them as they happen. Maybe it's time for a little Ex-Lax?
When I was having my head buzzed, another survivor warned against shaving it because of folliculitis. My hairdresser left about 1/8" all over, and it's going to be gone soon. I've been wearing a bandana around the house and a cap at night and they are full of tiny hairs. The worst is when they get in my eye – because they're white! I know they're there but I can't see them!
I loved the Mitford books! Read them all. Spent many years in the Episcopal church, sang in the choir and loved it, but times have changed. Still have an EC hymnal in the bookcase. Our choir did some amazing special music for Evensong and anthems. There weren't very many of us, about a dozen or so but we had a few really excellent voices (not mine).
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have no idea about double posts....I have said the same thing. In diff threads..want diff opinions from people on diff threads....seems logical no? I have rotator cuff tendinitis too according to MRI. Range of motion sucks but been trying to do as much exercise as possible....I 've been bad.
I'm going to have to agree with the shaving. I refuse to shave and my head has not hurt. I love the moustache idea with the kids! Glad the kids are seeing some fun. My kids lint rolled me and I thought it was very sweet.
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kmntwins - I think we are on the same protocol minus the perjeta for me...and started the same day. I'm having constipation too. I'm taking Metamucil, FiberCon and Aloe Vera Juice and eating prunes. Truly nothing worked till I gave in and used 1/3 of a Ducolax suppository. I don't think a whole one is necessary so cut into 3rds... Normally it would clear me out quickly...I still had to wait...but it worked. I am also drinking a lot of water...
My s/e's have be mild too even more this time...less sleepy and less stomach cramping. Still getting some weird pains around my body...but nothing too painful.
Hope this helps...
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pinkninja, I made it to church, too, but I wimped out and wore my wig. A few people complimented me on my new "hairdo," but the people I know better know it's not real. I'm a lector and had an awesome reading this morning (1 Kings: 9, 11-13).
I did indeed shave my head, and like Mags, have about 1/8 inch all around. I'm getting ready to teach, and wanted to get used to wearing my wig around the office.
It's been a pretty good weekend for SEs; I'm off to the pool for an hour to get in some gentle exercise.
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Puffin - I post on two different discussion boards (this one and the TCH board for HER2+ people) but usually about different topics/issues.
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Pinkninja you inspired me to get a fun wig. It is short purple! When I shave the hair down I'll have to post a pic.
I feel like I'm on the emotional rollercoaster this weekend. Having meltdowns and feeling happy in between....it's ridiculous! Got some protonix for heartburn and it really helped. Also starting rinsing with salt water for the sore tongue. Guess the ice chips aren't foolproof.
Headache is back too. At least I can eat for now. I walked around the capitol all afternoon yesterday with my family so that was fun. Madison is beautiful in the summer! They have non gmo produce at the farmers market too! Hope everyone has a good night.
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I got my DH to shave my head on Friday when he got home from work. I was near bald in patches from it just falling out and I was so tired of leaving a trail of hair behind me every time I moved. It's stubbly and prickly now, but it's so much better than patchy and falling all over the place. I wore a headscarf to church and errands today and felt pretty good in it.
Major panic attack today. I had an email this morning from my clinical trial coordinator telling me my platelets were too low (after only 1 chemo!!) and that I needed to get to a lab today and have another blood draw done. If they weren't over 100 today, we would have to push back chemo #2. Ugh. So not what I wanted to hear. I expect these problems after several cycles, not after just one! Anyway, I drove to the only open-Sunday lab in my area (30 mins away from home) and got the test done, and my platelets are high enough today, so, whew. Chemo #2 is on for Wednesday. Yay!
Sending good vibes to all of you.
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Hi ladies! I buzzed my hair down to basically bald today. Can't say as I like it, but I'm sure I'll get used to it. I just feel like I actually look sick now, instead of edgy and cute. Things are calm over here, a little of the big C the last couple of days and tiiiiiiiredess. Lots of naps. Been on neupogen 3 days and no pain yet.
The talk about blurry eyes has me paying a bit more attention. I was thinking I was just really tired but I'm wondering if I'm experiencing that as an SE. I'll keep an... Eye on it
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glad things worked out Kebab!
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Did anyone else have intensely itchy head before their hair fell out? Can't sleep as its bugging me.
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Yes, yes, yes. Going through that right now. My stubble is itchy, itchy, itchy, and when I rub it, it comes out.
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I also shaved my head to about an 1/8 inch and it's driving me nuts! When I lay on the pillow at night it hurts cuase the stubble pokes everywhere even when I wear a sleeping cap. I stood in front of the mirror last night and started plucking a whole bunch out cause I want them gone! I even tried to stick tape in it then pull it off but it didn't work too well. I need more than a lint roller! I may pluck the rest out today cause it's bugging me so much!
I also have some small bumps. zits i areas on my scalp and they are super sensitive, last night I actually put vaseline on the front part of my forehead for the dryness.
Today is day 5 and I'm almost to afraid to say I fee good! Still achy from the Nuelasta, little heartburn and yesterday has nuclear diarrhea a few times but I feel almost normal now. I know I have to wait a few more days to see how it pans out but I'm actually excited to feel this good. Still have the blurred vision though
I also know that although I feel great now, in 10 minutes that could totally change! I'm gonna run out and buy more yarn cause I started making neonatal preemie baby blankets again for the hospital. It's the only thing that keeps me still and resting and out of trouble.
How's everyone else doing this morning?
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pinkninja: good to hear you've turned the corner, just be careful not to over do
I'm day 4 of this second round, feeling icky - dizzy, heart a little skippy, wobbly legs again, knees just a little achy. Plan to spend most of the day in my recliner eating gingersnaps and sipping my water.
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hi ladies,
So assuming my bloods look ok, I go for much delayed chemo 2 today.
I am not sure why, but I am SO depressed. Maybe it's just the delays and the complications I have had, but I am somehow convinced that something like this will go wrong every session, they will constantly be delayed and I am never going to get to the finish line...feels like my life is on hold.
I've also started mentally catastrophizing - what if I need emergecy TE surgery? What if chemo isn't working? What if that headache/back pain/ rib swelling is SOMETHING ELSE?
This is so unhealthy. And so unlike me - I am normally very positive. I hope I feel better after I get chemo 2 out of the way today and at least feel like the train is back in the tracks...I mean, seriously...I am looking FORWARD to chemo...how messed up is that?
I might need serious therapy when this is all done.
Thank you for listening to whiny post. Love you guys.
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RainDew; All that you said brings back memories of 2012 when I did this before. It seemed then that it was delay after delay - mostly blood level issues. I actually went into this time thinking that the 4.5 month time estimate by the doctor will be 6 month like last time. Sometimes the delays provided a few extra days of feeling good between treatments. If it goes as scheduled, those of us with 6 sessions might be finished before or around Thanksgiving and pretty much finished with SE's by the New Year. That would be a lot to be thankful for! ....But I'm definitely NOT counting on that. I think it is more realistic to think that the "every 3 weeks" schedule will slip to 4 weeks on more than one occasion. Talking to others who have had this experience reinforces that as possible (or probable).Actually, being body aware might be a good thing. Freaking out about it... not so much
! Yes, I agree there is a ying/yang thing about chemo. Every terrible treatment behind you is one more you don't have in front you. Guess what I'm saying here is that you seem perfectly normal to me! Aw...the new normal.0 -
thanks Coyote - helps a lot to not feel like I am the only one ... Also to hear that sometimes delays are normal and it doesn't mean tx isn't working.
I am just so looking forward to having my life back. I can't work till I am done with chemo and I think this is part of the problem (I am 39 so career is a big part of my life). I get a ton of meaning in my life through work (no kids), and I am struggling to 'replace' that, so this feeling like this period might stretch on forever is really hard. I am driving DH absolutely crazy, which isn't helping either.
I'm off to MO shortly. Fingers double crossed I can have my chemo today...and recover some of my mental stability...
Thanks again!!
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RainDew,
I'm a little depressed this week too. Maybe because of the hysterectomy one week ago today. Hormones, maybe I'm not sure. I think we are entitled to be a little crabby at this point!
Shirley
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I'm trying a sewing pattern for head covers. This one is 100% preshrunk cotton. I thought I messed up on the directions, but apparently it's supposed to have the loose back. What do you think?
Shirley
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