Chemo May 2013
Comments
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So I woke up this morning because I couldn't stop crying. Saying goodbye to my family was really hard yesterday and just knowing that this event is behind us. And then having to take the Dexto (steroid) again this morning to prepare for tomorrows onslaught - I guess it all just got to me
Ughh - I'm so dreading this round 2. I feel better than I did but I still don't have an appitite and I'm still tired a lot - so I can't imagine taking my body down again. Yesterday I was so exhausted by the end of the day I wanted to curl in a ball. I finally got into bed around 8pm when the last of our guests left and it just felt so good to put my head down. I HATE that I don't have the physical stamina that i used to have.
Okay - I'm just having a woe is me pity party and I'll stop....Welcome Mia and Rockermom..
Oh question - we have SO much wine left from the party - would it be bad to bring some to my Onco nurses or do you think they don't like you bringing in alcohol???
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lpc - The nurse keeps asking if I've had watery eyes - apparently its a common SE from the chemo. So maybe that's what is happening for you. She recommended eye drops to treat the symptoms but not sure which kind....maybe just visine?
Miasara - sorry for your delay...just after gearing up to get started! Hopefully you wont have to wait long.
Gully and Lorrie - UGH! so sorry you're having a tough time. I hope the challenging days get shorter and lighter as we go on. Getting through this can be such a beast. Hugs to you.
Lorrie - I know what you mean about the emotional part of this. I try to be strong and non complaining around my teenagers - so in typical fashion they act like nothing is wrong with me and life is normal and mom can do anything! So I'm beginning to think a little moaning and groaning may be in order just to get their attention and awareness on the fact that IM GOING THROUGH CANCER TREATMENT and to be more understanding and realize I need some TLC!
Rockermom66 = Thanks for the pink wig info! I'm ordering one today. Did you have it styled or is it good out of the box?
Heres to everyone having a good week - we're on the upswing now towards our good days!
Annie
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I'm sure this has been answered. But, what is the Claritin regimen with the shot?? Thanks😀
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Lorrie, I think the hardest part of this whole thing is emotionally dealing with the length of time for treatment. I was schedule for 4 AC treatments (every other week) and told 4 rounds of taxol which is given weekly. Except, until the taxol started, we assumed a round was a week. Nope, a round was 4 weeks. That wasn't a happy day for me.
Try to look at each step. Count down each step. It helps to have mini goals like that.
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Annie, I dragged my son to chemo with me. He's 15. I thought letting him see what I had to go through weekly was important. It was also important for him to see it wasn't as scary as any of us imagined. He played his video games the whole time, but I know he was fully aware of what was going on around him.
Since this nightmare began, my husband took over getting my son out the door for school in the morning and I sleep in. When he gets home from school, if I need a nap, he's told to be quiet so I can sleep. I also make him do things for me as needed.
Since I had surgery recently, he came grocery shopping with me yesterday and put everything heavy or what I couldn't reach into the cart, onto the register belt, into the cart into the car, then into the house.
Make sure you make your teens part of your support system. I think it helps for them to understand and maybe, just maybe, they will learn to be a bit more helpful.
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Lorrie,
Maybe you should send a warning....during "week one" (or first 10 days after chemo) do NOT discuss my treatment, treatment plan or how I am feeling!
In my case I should just hang a sign around MY neck for my husband that says NO TALKING TO ME about ANYTHING related to how I feel, what I am doing, or ANYTHING ELSE! Lol. I am overwhelmed by what I feel is a lack of "action" on his part. I've been carrying the same chores daily, Same errands, same everything! Then he was mad that he didn't hear me acknowledge him when he was driving to pick up a play date for my son. I had answered,it took every fiber of my being to answer as I was scrubbing the sink.(after having cleaned the other bathroom!). This was on Day4! He is a tad bit hard of hearing, and I was on "low fuel" so he didn't hear it. I tore into him about his "expectations" for an answer.
I am so angry with my situation. He tells people I am "tired"...WTF- I'm not catching a break. By the way, we are both retired, his list of things to do is a mile long and all he does is sit on his iPad- the least he could do is look up things about what I am experiencing, or expected to experience? Or plan a celebratory vacation for when chemo is done...or SOMETHING!
I am stilly facing major surgery In the fall and I am just beside myself on how I am going to cope with that. My mom is elderly and frail and needy, so she would be no use. My two is a nut job and self centered and thankfully far away! Lol. My younger sister would bend over backwards to help but she works full time and has her own kids to attend to.
Anyhow, rant over. I am glad you brought your sister back to reality and then apologized. This cancer sucks. Treatment sucks. It is really hard to see past this at times. I don't think there is anyone who can understand what we are going through, unless they have done it themselves! you are right, no one wants to hear us complain, we make it sound good for them...maybe there needs to be a way to say something like "I'm having a really hard day today, but I'm trying to work through it". Or"I'm having a really hard day today and would prefer to not discuss it". Of course you know that will lead to people saying how good you look etc! So it will still be a "losing" situation. I wonder if you just said, please listen to me for a few minutes so I can feel better and then rant away! Lol. Bet they would never ask again!
Btw, have you tried the Claritan 24 to get rod of the bone pain? (You are doing Nulasta?). Maybe that will help? Glad you had the oxy.
I got To go. I've already done 4 loads of wash, pulled apart my boys room, did up all the dishes and compiled my grocery list. God forbid I sit on the iPad any longer, hubby might think Im tired. Lol
Maybe I should go look for a job.
Pat -
I am having my 3rd round of AC today - why can't they just fast forward time
Some hairs on my head are still hanging on but about 9/10 have fallen out.
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argynnis, I never lost ALL my hair. I shaved it down after my 2nd treatment, but I always had a bit of fuzz. I LOVED it when I stopped growing hair on my legs and under my arms. So quick to shower when you don't have to shave, or let the condiitoner sit in your long hair for a few minutes. Embrace the good!
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Thanks all.... For the pep!
Slept pretty well last night & feeling slightly better, but not going in to work today. I'm so lucky the owner is so flexible with me....
I will do some of my consulting work from home though. I have some catching up to do for one of my clients who decided that now is the time for him to get busy. Glad for him, but struggling to keep up both jobs! Hahaha
And I'll take the rest of the day to lay around, be lazy, take naps & maybe watch "Ellen".....
I was looking back at my previous posts last night (from when i joined the group) and saw a pattern of positive thinking being squashed down to whining. Gonna get back to the positive FO SHO!
I was also realizing how awesome everyone in this group has been! Helpful, full of info & soldiers!
I hope you all enjoy your day today!
Happy thoughts
Lorrie -
Pat...
I can almost 100% relate with the hubby situation.... I don't know why I get so angry when I hear him on the phone with someone and he says "she's doing great". I don't want him to paint a picture of mystery to everyone but IM NOT DOING GREAT....
I think the part that bother me is that maybe he actually thinks I'm doing fine thru this.
In my house, it's like it has been for the past 21 years.. I'm sick? Well laundry, dinner, housework still needs done and I did it... When hubby has a toothach, he's down on the couch whining as I take care of his needs.. Oh yeah... And I love it when he points out somethin he does do... "hey, I loaded the dishwasher" WOO HOO! Let's get the neighbors together & hire a marching band! That deserves a parade! Hahaha
Ah well, What a' ya gonna do? LOL -
itiswhatitis, Perhaps you need to stop doing so much. When he has no clean underwear left, and no clean dishes to eat off of, maybe he'll get it?
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itiswhatitis: I agree with Gowiththeflow here! Early on in my marriage my husband used to throw his dirty underwear behind the bathroom door berfore he got into the shower. I would go after him and pick them up each day and place them into the laundry basket. I got fed up and decided one day that I was not going to pick them up! Days went by and the pile got bigger and I got super annoyed but did not give in! Then the question came one morning, Where are all my underwear? Proudly I yelled, check behind the bathroom door!!!!!! LOL Then I said if they are not in the laudry basket they dont get washed! He has not done it since, its been twenty years!
I swear husbands are like little boys, they dont know the simple things we think they should know to do in certain situations. My husband will notice that I dont feel well but he does not always know what I want him to do to help me , so I tell him! (My husband is literal if I dont ask I must be fine)
I keep a grocery list going in my kitchen, when Its gets about 10 items long, he offers to go to the store. (Because I told him, that is something he can do to help me)
Sometimes I need left alone, so he asks if I want to go the movies with he and my sons and understands when I say no, I need space. (Because I told him)
Sometimes I need comfort, so I just ask him to rub my back or come curl up in a chair with me. (I told him that when I get down just holding me helps me alot)
I think our husbands get scared of our situation, and go into denial, to protect themselves!
I hope everyone has a better time of it. Speak up, we deserve to be cared for during this freaking rollercoaster ride we are all unwillingly on!
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Lorrie,
You crack me up,they could be brothers!
Except that I would prefer hubby to say "it's like she's not even doing chemo,she cooks , cleans, shops, etc etc...." Heck, that would make HIM look bad! Lol
If I'm REALLY sick, like up all night vomiting, he will still come and ask me questions about the kids. (He doesn't want to go to school today should I let him stay home?---lol)
Last time I just looked at him and shut my eyes....it's a household, not a major corporation we run here! Lol
Gully,
I don't do my husbands wash anymore....I pick around his when doing the wash. I have enough wash with 3 kids, sports, school, kids changing a million times because of the sprinkler....lol.
I think he finally figured out it wasn't happening,
I still give him clues about the wash and upcoming events. "Don't you have scouts tomorrow? It's probably a good idea to get all the uniforms ready today so you won't be running like a chicken tomorrow. Half the tme he winds up running like a CRAZY chicken to get the uniforms in order....20 minutes before the meeting., can't say I didn't warn him! I just stay out of the way! (And laugh inside my stupid little head!)
Tonight is scout night, I will be laughing again!
Children learn a fire is hot the first time they touch it and don't do it again...you would think a grown man can learn from his mistakes! Lol
I hear you about guiding him...maybe I will try that approach again. I've left notes, followed up with phone calls and conversations and he still can't get it right. I think it's all part of the master plan that men get SECRET training in...play dumb, do less. So who is really getting the last laugh! Lol
Pat -
Wow Patty you certainly don't sound like a retired woman! I must say I am in awe of you women who are doing chemo and still taking care of kids.
I have been taking care of my husband through back surgeries
,meningitis, chronic migrains for years now. I am lucky that he is more than willing to step up and do his share now. I still do most of the laundry but he and kids have taken over cooking cleaning and shopping. I just don't have the energy or desire any more. Work wears me downl like it never has before. I do believe I have aged 10 years since march! Today is first day I went in and didn't make it 8 hours.
Lisa -
Oh Lisa,
I don't envy anyone that has to go to work!
I honestly don't know how I worked full time with three kids and no help at home.
I can't even imagine having to just go to work at this time (though I do think T times it would be nice just for the change of scenery!)
Funny how no one wants to be in anyone else's shoes! Lol
I have a bad back as well. I feel your pain, to a degree, but it sounds like you have a lot more on your plate with migraines and meningitis! Glad hubby is helping out.
I let it be a free for all at dinner time if I don't put dinner on the table. My kids aren't too dumb that they will starve to death. They might not have nutritional value in whatever they are choosing to eat, but they will survive! Sometimes I just need a mental break as well as a physical break! I usually pay for it later with the clean up though.
Pat -
Luv that dinner plan too! At our house we call it "fend for yourself" night! LOL.....no one at my house has died yet either!
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Question for you ladies who've had a lumpectomy. Before my diagnosis, I had pain and burning sensations in my BC breast. This is what alerted me to get checked out...along with some minor nipple discharge (no lump could be felt). After surgery, all was quiet in that breast for several weeks - but I now have the same burning and slight pain there again. Anyone else experience this? Hoping it's the healing and scar tissue from surgery...but of course my mind runs wild.
I see the surgeon in a couple of weeks for my 2 month post check up and will ask him, but wanted to ask you too.
Annie
Annie
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If you are concerned I wouldn't hesitate to call and just ask over the phone. At least you can get an idea of whether it is a complication or normal healing. Especially since you said it's the same pain as before.
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Hi Pattysmiles, I knw yorktown heights, we were born and raised in the bronx and were going to first relocate to mahopac, it was my favorite town....but my family had already ventured to monroe and that made our decison. Pennsylvania, we were just talking about retiring there and getting away from our high taxes....4 more years of high school for my youngest and then we'll see.
It is waht it is = i dont think anyone understands us....thats why i love this site..we can complain, talk about how good we are doing, have a pity party...we all get it. Its just the way it is.
I'm working or trying to working have taken some days off....for chemo, neulasta shot, short hospital stay and today = HOLY CONSTIPATION is all i can stay, but stool softener, mineral oil, miralax and exlax and I managed to stay out of the hospital. Most days I work most of the day and take care of most at the house. my husband and kids are very supportive, but they dont really get what i'm going thru either.
Good day to all.
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Well, wore my wig to work for the first time today! Was a bit nervous, but everyone was really supportive so I appreciated that very much. Feeling better today - no anti-nausea meds. I'm grateful for my off week from Chemo - makes me feel human again
Can't say my little girl is excited about Mama's new hairless head, but she's coping pretty well. Anyone have small children and know what signs to look for to make sure they are coping okay with it all? My little one seems fine, but I don't want to just assume. I'm open with her about the entire experience...I often wonder what she'll remember of all this as she gets older.
Worrywart93 - totally with you on the constipation!
Broke down and hired a cleaning service for a few weeks while doing chemo. For me, that's a hard thing to do as I'm a bit of a control freak about my cleaning...but finally realized I needed some help and with my husband and I both working and a child to care for and all of this, something had to give! Today was their first day and I have to say, the money was well worth the feeling of coming home to a clean house after a full day of work!
Have a good one everyone!
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Annie, I still get the occassional shooting pain in my lumpectomy site as well. It seems to get worse in the week or so after after an infusion, right when I'm experiencing the worst of the side effect aches and pains in general and then goes away again.
Definitely talk to your doctor about it if it concerns you, though. It never hurts to ask.
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MomofSam - There is an organization called Cleaning For A Reason who clean houses for chemo patients for free. You should look them up ad see if they offer it in your area. Ironically I have a cleaning business so I clean houses for a living. The last thing I want to do when I get home from work is clean my own house. I was really exhausted after my 3rd round. I sorta hired my 16 year old to clean for me. I loved joking with her that I finally have a maid.
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Has anyone shaved "shiny" their head yet!? I buzzed it to a zero a bit ago and now it's all patchy and not sure if I should shave it or let the whiskers continue to fall out?.. I'm nervous about cutting myself while shaving... But it's lookin mangie...
It kinda looks like a zombie head! Haha
Too bad this isn't happening during Halloween (my fav holiday.. Even better than Xmas) I would really have fun with the look! LOL
Oh boyeee! -
I think we left ours at 1 or 2 when I shaved. I had a tiny bit of stubble and it's growing in slowly (although more on the sides than the top right now) The stubble washes right down the drain when you shower.
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Annie, that's how it looks right out of the box!
ItIsWhatItIs - try using duct tape to help the rest of your hair. I've been doing it, it works.After reading all of this I'm so glad I'm not married anymore!
Chemo #3 tomorrow morning. I just took my dexamethasone because I forgot earlier. I might be up all night!
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Rockermom:
Duct tape! that's hilarious! We did it at work as a joke a week or so ago!
Good luck w/ #3.... and as far as the hubby goes.... I have my complaints, but very grateful for him at times as well.... He puts up with a lot from me too! Well not really! I'm an angel! -
Does the duct tape not stick to your scalp? That's what I'm worried about. Getting ready for round 2 here
. I already have heartburn! Bad sign. And a really sore throat.
My husband has been pretty amazing thru this. And the poor guy, we haven't been " intimate" since March. I can't think of anything I'd rather not do - I feel so unsexy.
We have such a full house right now, my 6 year old is sleeping in my room and my cousin is downstairs on the couch so I feel like I can't get up and go down!, last night I was reading a book on my iPad under the covers when I couldn't sleep!! -
Called out for 1st time since chemo started. Actually 1st fallout in 5 years. Hardest call I ever made. Round 3 has just knocked me off my feet! Hard time forcing myself to eat so have no energy. Rounds 1 and 2 were so uneventful was not prepared for this. Thought it would get easier not harder.
Kate good luck with round 2. Hopefully they will give you something for the heartburn and your se's will be less this time. No intimacy beyond hugging here either since mastectomy in March. No desire whatsoever. Wonder if it will ever come back?
Lisa -
Annie,
For peace of mind
Call your doctors office and tell them it is the same feeling as when you found your cancer....DO NOT put words into your sentence like "I think it's nothing but"...I swear some doctors or staff pick up that and then pooh pooh the patient. Use a statement like "I'm very concerned"...it shows YOU are taking it serious and you expect them to as well.
Lisa, sorry you aren't feeling so hot this time around...you got away wi the first two sessions, that was great. Ni keep thinking that by being able to do so much while on chemo it will make anyone near me look bad , God forbid, if they go on chemo and are hit hard.
Just had my 10 heard old come screaming at me that she missed the bus. I woke her three times and told her the hot breakfast was ready and I wasn't waking her again....instead I sat on the deck enjoying my cup of coffee and this BEAUTIFUL cool breezy morning. Guess break time is over!
Pat -
My hair came out in a big clump this morning. It is shedding faster than I can keep up with it, and now I have a bald spot. Just called the hairdresser, and he is going to buzz it down to a manageable size for me this morning.
I swear, cancer is a series of little losses, over and over again. It is wearing me out today. But,like everything else, I will get through this, too. My husband is going over with me - I am not sure who is giving moral support to whom at this point. But it is what it is...
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