Starting Chemo, November 2013 Group

Hi! Smrlvr, Lisa, Quirky, Amazon, Wally, Jab, Veronica- the twitchy, rolling pains have been the bane of my chemo experience from the beginning. Apparently they fall under the peripheral neuropathy heading. It causes real, nasty pain. So much sympathy for those of you still getting infused. Two months out, mine is slowly getting better, but I probebly had a worse reaction than the rest of you. You know, those of us who were on TC sort of didn't want to complain TOO much since we knew we were on a "lighter" regimen then AC. But taxotere/taxol sure does a number!!!

My nails did ok, and I'm thinking it's because I put tea tree oil on them throughout treatment (I think it helps having a woman MO, she thinks of things like nails). As for icing, I think Canada and the EU are well ahead of the US on that front. The bottoms of my feet burn when I walk. I've started wearing fleece socks to bed because I read that it helped with the pain the next day.

Audra, good luck with the new dr! Tonilee, hang in there with the rads! Phebe, sounds like things have been really tough.

I think sometimes our doctors don't want to tell us too much because they're worried that we will skip out on part of our treatment. It's easy to whine and complain, but the real problem isn't the treatments, it's that we got a deadly disease, and the docs are trying to keep us alive. It sucks, but there it is.

Lisa, it's so funny you talking about the handful of pills you're taking. Here on the other side, I'm still taking handfuls of pills, but they're vitamins and minerals as I try to rebuild my depleted body!

Hang tight, everybody! 

hi all! Im not intentionally ignoring yall....I think of u all the time. Just been feeling crappie since last chemo in jan. Havent even read emails for MONTHS! I must have 15000 ....egads.  just havent wanted to even talk since last hospitalization.  I want to ignore any of this is occuring.  II was supports have followup in jan but the office said no appts till mid march....then when I called to confirm appt last week they said.....YOU CANCELLED FIVE APPTS!!!!  NOT TRUE....we though you went to a different ONCO just because of the distance..... Then when I went for my appointment on thursday my MO asked why I have not been in sooner!...WTF???? SORRY for my language. ...how can I trust any of them? I have major PTST from 74 day hosp where they almost killed me in 2005...not cancer related. ...then the insane hosp in January. ..im just ignoring it all at this point. When u have a complex med history then add BC....EKKKKKKKK.....if I didnt have my faith I would have jumped off a bridge along time ago! Yet we are human and emotions can throw you for a loop at times! Just more testimony. ...in time.... MO wants me to take aromadex....which is diff than what she said in beginning......I am STILL overcoming SE of C/T...ARGGGG...... I want to see how everyone is doing but between lupus flairs and chemo SE...I am a zombie! !...love to all! When my brain can process I will catch up...much love and PRAYERS!

How much hair do yall running w me have? I still have about a mm of fuzz since jan....funny how my goat whiskers on my chin are longer!!! Go figure!!!!

Paulette, the arimidex is making me slightly nauseous. The vitamins and minerals are only a little hard on my stomach: I try to take them with food. Smrlvr, I finished mid-January and I'm still, like Paulette, coping with the SE.

lisa: Yes, it will pass! I hear you loud and clear! My legs feel heavier by the day and I have one more chemo to go! That sucks! I just pray my body can hold up all that poisonous damage that this treatment brings. 

But what's the alternative?! It sucks no matter what! At least with this option there is HOPE!

(((Hugs))) to all long suffering various SE! 

pat....I cant take vitamins.....they make me puke..I don't if they can give iv...if not im cooked! I threw up and have had belly pains every time I take vitamins.  I guess the gastroperes makes it worse.

I'm want so desperately to read how yall are but my brain is in lo down! I haven't slept in two days....I guess with my situation having lupus and dealing with our crapshow....plus when I do have energy I overdo....it throws my body into Neverland!!! I just want to try to be normal!  the multitude of autoimmune pbms just make it worse...and USUALLY the cheerleader but recently I just cant. That is frustrating. ....im used to picking others up!!!! Thats one reason why I haven't posted. I dont wanna complain. ...I like to be positive. ...I dont want to thick how this new drug will make this even worse. I dont want to even start it....please forgive me for not being there for yall.Im feeling like im not being a good friend....

why is my pic sideways? ??....lol...I guess its how I feel....crocked! !!! Lol!!!!

Hi Ladies,

Good to hear from you Paulette. You must find this so hard having lupus as well as cancer, and with the recent other problems. I was told when I was first diagnosed that having an autoimmune condition (in my case arthritis) makes the treatment that much harder. Your body is already fighting the lupus, and then throw a bunch of chemo in there, and whammo, its a real mess. Anyway, I hope that you and your MO can get on the same page. The 'rebound effect' of the chemo on the autoimmune condition is real too, meaning, between treatments, the my arthritis is much worse, which contributes to feeling seriously fragile. I am never sure if what I am feeling is SE from chemo or a huge arthritis flare up. Your lupus, I bet, presents the same challenges. My thoughts are with you Paulette.

Regarding SE's, I think that each of us has our own 'worst' and for us, in that moment, it is as bad as it gets. When I read the entries in this forum, it seems that the chemo has a slighly different (or a lot different) effect on everyone. This might be because of the kind, or dosage or basic human physiology, but it is unique for each of us. It is like the diagnosis of breast cancer, it is hard to compare as with each of us, it has its own unique elements. Anyway, it has been great to have so many perspective to compare to, both in what the SE's are and how each deal with the SE's. Maybe unnecessarily, I do get concerned that there are ladies still in chemo, experiencing very significant SE's when many other have moved on, so the moral support isn't there as much. I know for me, it is scary taking 7-14 pills a day, none of which I would have even considered taking a year ago, some of which are highly addictive and others can quickly shut down organs if not taken properly. My recent discussion with my MO was about my NOT being a pharmacist; but sadly, I think I know more about the drug inter-actions than my pharmacist does. Anyway, as my own situation evolves, I hope I can learn as much as I can from those ahead of me on the cancer train, and I will continue to root/support those behind me as best I can.

A nice thing happened to me the other day...

The other day, I received a phone call. It was from the head of the local quilting guild (Yes, there is a local quilting guild here, for those of you in the big cities...). They wanted to deliver a quilt. Later that day, a lady arrived with a beautiful red, pink and brown patchwork quilt. It turns out that the provincial quilt guild makes quilts for those with breast cancer. What an amazing gift!

I hope you all have a minimal SE this  Sunday

Judy

paulette: When is this official beeeeatch fest day? Is it today? I feel I need to talk to somebody, vent or something, as I feel my hubby can't take my moaning any more. He asked me today: Does everything have to be about cancer?

He is worn out and I am worn out. I wish I could cry, but as he put it: My tear ducts don't work!

I want to do something, I want to go somewhere, but I am too exhausted and dizzy, so instead, I am going to crawl underneath the covers and stay there for a while.  

Judy: I like your resolve to cheer those who are still in the tunnel. We NEED You! I think that the quilt idea is great. How did you find out about it?

Phebe: I'm glad you are slowly recovering and be able to get out and do some walking.

Wally: What does your MO think about your misterious fever? 

Here is a picture that shows how I have been feeling lately. How would you describe it?

My husband hasn't said anything like that to me, and I don't think he would, but I'm sure he's thought it. I know that when he was sick a few weeks ago he was definitely feeling more pitiful than he would have normally, because I was sick at the same time he was, and I was sicker. Usually we time that stuff out perfectly; first he gets sick and I take care of him, and then I get sick. This time I wasn't able to take care of him, and that was after he'd just spent several months since my surgery pretty much looking after my every need.

I've started to try and kind of actively make everything NOT about cancer lately myself though. Encouraging hubby to get out and do more stuff on his own if I don't feel like going out, taking more interest myself in getting back to our plans for fixing up our house, etc., and I know it's making him much happier that I'm doing that. It's making me happier too. The side effects from chemo I'm dealing with one at a time as if they were little sicknesses and ailments of their own, and not treating them like part of the big Cancer Picture. I'm definitely ready to move on, and I'm sure my husband is too.

I figure I HAVE to do that though, and mentally move on from the whole cancer thing, because it's not going to be truly OVER for a long long time; I know I have 10 years to be on whatever drug gets decided upon, and that I may have side effects and aggravations from that, as well. I refuse to let any of it mess up our up-til-now perfectly happy relationship. I told him the other night that I realized that since September our lives have pretty much been all about ME... and said "Give me this year, and after that we'll make it all about you again. As it should be." Which got a good laugh out of him. So I think he's dealing with it okay. He said the only thing really that bothers him is that he misses having me TAKE CHARGE of stuff and make plans for things he didn't much want to do--like re-painting the living room. I'm like...how ironic. The things you miss the most are the things you bitched about the most. He agreed that it was funny but said "Really, though, that's why I married you." LOL. Men!

I'm in, Paulette!  You made me realize how I've been a bundle of resentment for a few days now, and I'm only hurting myself.  I think you'll be hearing me vent all the way in Florida.  

Get ready for me! 

Paulette: I love your exotic head dress!

Oh, and the pic is not sideways any more!

Happy Beeeeatch Fest Day!

Although, I don't see very many  of us 'celebrating' this rare occasion!  

Here is my scream from inside the tunnel, and hoping that it's going to be heard outside as well. 

Tomorrow is my last chemo, yay, but I am finding the home stretch increasingly difficult. It is the physical and mental exhaustion with every step of the way. Yes, I can see the finish line, but every cell in my body is screaming: Enough!

I need people more than ever to cheer me on, so that the collective energy will carry me over.

I need to hear the loud voices!

I need to see that someone is there!

A few more meters and this part of the race is done!

lisa: Thank you for your encouraging words. I really needed them. I have tears pouring down my face as I am typing right now. (I guess my tears ducts cleared up finally!)

I want to say the same to you: We can do this! 

We can cross the finish line!

I wish there would be a way to take your, mine and everybody else's pain away and return it to the Sender! 

We don't need this cr*p!

(((Hugs)))