Starting Chemo, November 2013 Group

wrenn

Lisa, i loved reading your vent. Not because you are suffering but it makes me feel more normal. It must mean so much to the lurkers that they are not the only ones experiencing these random weird pains and emotions. Now that my hair is almost gone it doesn't hurt to put hat on and off and i agree it is either too hot or too cold.

wrenn

I was in the laundry room of my building today and badly wanted to rip my hat off. No one was in there but i worried i would scare anyone who came in. I hate seeing that look in their eyes that say "ack! Cancer"

lisa137

Oh I don't even care if they go "ack cancer!" I keep my hat on because I don't want anyone going "Well, she's bald, but she's no Sigourney Weaver...." It's pure vanity in my case.

I know or have known so many people who have, or have had, cancer at this point that it's just not even unusual, much less something I worry about hiding.

Plus (story time) I guess I was a little immunized to any "shock" of cancer from the time I was a little girl. My grandfather's sister---my great aunt--- had breast cancer in her right breast back in the 1960s. (I guess in those days they just whacked off the offending boob and probably all the lymph nodes just to be safe, and sent 'em home to hope for the best, but I don't remember her complaining about much other than saying "I don't have a lot of strength in that arm."

She was one of my most favorite people when I was growing up, and I spent a lot of time with her, so I also grew up seeing her get undressed at night by taking off her bra and the fake boob (ordered from the Sears & Roebuck Catalog most likely,) that was hidden within it, and saw how careful she always was with her "scar," always putting baby powder on it and then a cloth baby diaper between herself and her fake boob --- I assume so she wouldn't get heat rash from it.

She was also one of the "jolliest" people I've ever known, if not THE jolliest...and "jolly" is not a word I use. She never seemed to be down or depressed or worried or upset or ....well, anything. She had a world of patience with me and any other little kids that were around. Never had a bad word to say about anyone. She never married, but she never seemed to care that she hadn't, either, at least not much. She lived with my grandparents and helped my grandma keep house and do the cooking and in her spare time she made beautiful quilts and embroidered cute animals on all our kiddy clothes, and although she had a mouthful of false teeth and couldn't actually WHISTLE, she never let that stop her from acting as if she was whistling no matter what she was doing, through pretty much every waking moment.

So for me, "breast cancer" was just something I grew up knowing about, from the earliest age I can remember, because of her, and I guess maybe seeing her just move on with her life as if nothing especially horrible had happened to her -- or ever would again -- has been a part of my strength through all this.

In the end, her cancer DID come back, in her lungs....but wait ya'll....she was in her mid 70's when it happened, and even then (with pretty much no treatment available compared to what we have NOW) she lived on for several years, just coughing a lot and slowly losing her health --- it was almost as if she actually died of old age, and the doctors actually decided at one point that her heart would probably give out before the cancer killed her, anyway. In between the first cancer and the return, she had YEARS of cheerful happiness, making pretty quilts (which are in my house even today,) helping to raise other peoples' kids, watching Roy Clark on HeeHaw and giggling (yes, giggling) because she thought he was "cute," getting deeply involved in soap operas and The Waltons, and just generally living a full and happy life. So I guess I draw some strength from *that,* as well.

Her cancer NEVER defined her. She never ....as that onc said.... she never let cancer live her life for her. SHE lived her life, and she enjoyed it, but she never hesitated to tell people she'd had breast cancer, even though in THOSE days it wasn't really "talked about." She explained all of it to me that a kid of that age could understand....so when I had my own double mastectomy, I already knew a whole lot about what to expect. That may actually be why I've chosen to not have reconstruction: It was never an option for her, and she didn't care.

It would never have occurred to me to go "ack cancer!" at her, so it's truly never occurred to me that anyone would have that reaction to me. Maybe they do, I don't know. But if they do, I don't care.

I do, however, care if they giggle at my less-than-beautifully-shaped-head. So I wear a hat or scarf ALL THE TIME. Vanity. Go figure.

NorthwindsGS

I received my scarf and card today from Good Wishes today as well! The card was a nice personalized touch. Helped make a lousy day better!

Anxiety is a big part of my life now.......will chemo and Rads work.....what long term side effects will I have. Biggest one for me is the fear of getting a differant cancer from the Radiation and chemo as that happened to my dad and a close family friend. It was the new cancer that took them for us, not the original one. This keeps me awake at night and I actually tremble when I think of my next chemo treatment. My doc doesn't like to prescribe Ativan though he did give me a small supply as he felt I was to anxious. Tried explaining why I feel so scared and the anxiety but he justs states I am young and strong and can handle the treatments. I like him very much and he is a regional director for BC, just wish he was more supportive with the anxiety issue.

I hope we can all stick together through our treatments and continue even after we win our battles with BC. I am not as good at words as many of you are but I get great comfort here with you ladies and think of you all often. I smile at your jokes and antics, cry with you when your treatment is delayed or you are hospitalized, or suffering side effects. I am right there holding your hands through all this and can't wait till we are on the uphill side of this war and can all breathe a little easier. Suppose it is past my bedtime as I am getting all mushy on ya. Hope everyone gets a good nights sleep and a side effect free day tomorrow!

lisa137

@Northwinds my onc takes the opposite approach: He prescribes ativan as part of the anti-nausea regime, and told me to go ahead and keep taking my klonipin which my PCP gave me for anxiety even when I also was taking the ativan (though as it works out, I just rarely take the ativan at all; don't need it.)

His general attitude is that cancer and cancer treatment sucks, and we ought not have to be miserable if there's a way to prevent the misery. I do, however, understand why some oncologists are reluctant to prescribe it FOR anxiety, since treating anxiety isn't technically their job nor their area of expertise (though some DO consider it part of their jobs and do it quite well. Just depends on the doctor, I reckon.)

If it were me, I think I would look him straight in the eye, take a deep breath, and say "Look, I REALIZE that I'm young and strong and will make it through treatment, HOWEVER, anxiety is a big part of my life right now, I am not handling this well mentally, and if you could recommend a therapist or counselor of some type who has experience working with cancer patients, I would REALLY appreciate that, because I NEED to be able to get through treatment AND function in my life WHILE I'm doing it." See what he says. If he doesn't recommend someone, find someone on your own. Your onc isn't your boss, after all, and YOU are the best judge of whether you need some help getting through this crap or not. Your onc isn't the one going thru it, after all.

lisa137

@Paulette : This wonderful thing you said:

"once u are one of u are ETERNALLY connected!! remember....the Aliens linked our brains!"

made me laugh out loud and completely BANISHED my blahs and ughs.

You are awesome.

Also, I think you might be right.

Please, please TAKE CARE OF YOURSELF!! For us! We need you.

NorthwindsGS

When I first asked for the Ativan for the nausea and anxiety he said that he doesn't like his patients on it as it can lead to a whole new problem for them. Even after I explained my fear issues with the treatment plan he didn't budge. Only after we had a few appointments with him and his nurse and our chemo nurse told him how anxious I was during treatment did he prescribe a small supply. Enough to take a pill the night before and the morning of treatment.

My primary doctor moved on to a new position so we are in the process of looking for a new family doctor. Our old one would have been more than glad to help with the Ativan once he knew why I needed it. Don't know if they would prescribe it for me in a urgent/walk in department or not. Might have to try it there until we can find a family doc. Have been asking for referrals for one however most are not taking on new clients or are PA's and I feel better with. Regular doctor right now with all that is going on. Think I will try again in the morning to call around to find one. A little medication might make the upcoming holidays a little brighter........

wrenn

i agree that you should push for the ativan or clonazepam. I hesitated to take it but the psychiatrist and my family doctor almost insisted on it. I hope you can find a doctor that will listen to you.

My comment "ack cancer" was mostly meant to describe the people in my building. A few years back i was avoided in the elevator because my son had been killed. Now they worry about my health and i don't want reminders too obviousmfor them. We all care for each other. Strangers i assume can handle it.

Phebe38

hi everyone: I enjoy reading your posts and can identify with all of you. Even though I don't post much yes I like the idea of us sticking together. I have four more chemo treatments until February then rest for four weeks. In April I start five weeks of radiation. Yes I still don't wear glasses cuz they make a big dent close to my ears. I don't get headaches from not wearing them. Today I got scared. I was eating pineapple and all of a sudden my tongue felt like it was burning so I stopped eating it and rinsed my mouth with baking soda and a little bit of salt. I won't eat pineapples anymore. I still have my taste buds. I come and read daily. Today even though it was cold I went for a long walk. Exercising is helping cope with this sickness. I pray daily for God to give me strength. I healed nicely where my surgery was and the port is taking it's sweet old time to heal. Both of my arms are ok. I still got my tastebuds. I haven't lost my eyelashes or eyebrows. Tomorrow I will address and respond to whoever lol. The time when I complain about people not responding I believe my brain was messed up with chemo. A lot of you did respond to my post. I cut and paste and print it out. Forgive me. Every day I come here to read your posts. You inspire me. You are all so brave. I continue to drink like an elephant. Especially at nights because my throat and mouth feels really dry. Drinking help me not to be dry.

lisa137

Yeah, I understand what he's saying about the Ativan, and yes, it CAN lead to a whole new set of problems.

What my PCP gave me was a simple regimen of klonipin at a low dose --- half a milligram in the mornings, unless I just feel so serene I don't need it (lol) and another half a milligram in the afternoon or evening --- again unless I don't feel like I need it. For a total of 1 milligram per day. Which, in the grand scheme of things, ain't much.

And he said that IF I began to feel that I needed ANY more than that, to make an appointment with him right away ---and he can get me in the same day I call most times--- so we could discuss what was going on and if we needed to raise that dose or maybe seek another option. I know how addictive this class of drugs can be, so I'm VERY comfortable with the way he's chosen to handle that, and my onc was extremely comfortable with that line of thinking, as well.

This is the regimen I've been on since either late October or very early November, and thus far, I've felt NO need to exceed my "dosage" of the klonipin, and it's still working just as well as it did to start with: I have not built up any tolerance to it. The trick is to realize that all it's going to do is "even me out" a bit, that I'm stll gonna be a little upset sometimes, or depressed, or teary, or grumpy, or whatever, and that that's no excuse to go running for more klonipin. The difference is that I dont' have panic attacks or lay awake at night thinking of the worst possible scenarios, nor do I make my husband utterly miserable by being a blubbering baby one minute and a complete jerk the next, which is what I was doing before I talked to my PCP (and I had not yet met with my onc at that point.)

My surgeon had given me ativan (2 milligrams at a time too!) and I know that I WOULD have gotten into trouble with those, especially at that dose, because I'd take one and feel GREAT....for all of 6 hours, but then I'd fall apart again, so I'd want another...... Half a milligram of klonipin does NOT make me feel "GREAT" but it does make me feel human, and it lasts for 8-12 hours, after which I either still feel human without another one, or I go ahead and take my second one of the day and sleep great.

my onc's dosage of ativan is also half a milligram, btw. Like I said though, I just usually don't take it. The pheragan or whatever it is seems to be my best "go-to" for anti-nausea, so I've no need for the Ativan most of the time.

lisa137

Oh Phebe, I have so many problems with my mouth in general, and I cause most of them myself!

On some days the only thing I can really stand to drink is seltzer water with a splash of cranberry juice in it because it's the only thing that TASTES good....so I drink gallons of it, and I guess the acidity makes my taste buds sore. I have partial plates on top and bottom (killed my front teeth by chewing nicotine gum for years lol) and I need new ones and can't get them right now, so THEY make my mouth sore as well...It seems like that's what chemo really is for me: A division between days when I can taste things but my tongue hurts, and days when my tongue doesn't hurt but everything tastes like ditch water anyway. Plus I "vape" on an e-cigarette. I'm sure that makes it all even worse.

But now I wish I had a pineapple!

I think my eyelashes are going, but my eyebrows are hanging in there so far..... and so is most of the fuzz on my legs and my armpits grrr! If there was ANY justice in the world, leg and armpit hair would be the FIRST to go!

BTW Walleymama, forgot to ask....did you KNOW your port had flipped over? Did you feel it? I feel like mine will probably do something just like that, just to spite me, before it's all over with because I don't like it, and it doesn't like me.

Also question for those who had mastectomies before chemo: Do you feel like your surgery areas get squishy or more tender or ... anything at all.... after chemo? I can't decide if it's my imagination or not, but it just seems like after both chemo treatments I've had so far, my healing process went backwards a bit...but then got all better again.

Also sorry for bombarding the board with posts tonight, but it's made me feel better for one thing.....and for another thing, being unable to sleep at night is YET ANOTHER WONDERFUL SYMPTOM of my godawful menstrual periods which I wish would hurry up and go away forever already. Argh! And nope, neither klonipin NOR ativan helps that at all, for some reason.

Paulette23

hey......grrrrrummmpy me! I cant even read post wanna and have stuck my head in the ground..cant sleep and am TOTALLY CONTEMPLATING running naked ...cold and all...screaming down the street! then I think that I'm not alone...though I feel sometimes I am.....a4rrrrrrrrrrffffggggggggg.picture my naked freeing body parts ......freezing....um....rethinking this dumb idea!

smrlvr

Sorry I cannot address you all personally right now. I have been up,for hours in spite of 2 ativan. I had chemo #3 today and my headache from #1 has returned with a vengeance. So I can't sleep.

The last time I had them slow,the cytoxin drip so the headache wouldn't be as bad, but today the nurse sped it up ,in the end because I had to go straight from chemo to the hospital,to,get an ultrasound on my left elbow area. My MO. Wanted to,rule out any blood clots, which is why he ordered it. The technician said I don't have any clots, but there is lymphatic fluid in there, so I really need to get myself to a,lymphedema center ASAP.

Figures, when I feel the,sickest, I have together this straightened out. I may have overdid my exercises, or carried in so e packages that were too heavy. Either way, no snow shoveling for me!

I have found I need to take 2 .5 mg of the Ativan now just for,it to be effective. I really need them mostly for sleep because of anxiety. My PCP said next time I call for refill she will put me on a sleeping pill instead so she doesn't want me getting addicted. That is fine with me. Lisa, I am glad phenegran is working for you. I didn't want to take it, but I feel,so nauseus with this head ache that I am going to try when my Benadryl wears off. Nurses said to try that first.

I think my MO is finally learning that I am the anxious cautious type and I think he gets it. Unless you have given a cancer diagnosis, you can't understand the range of motions and anxieties. I would really like counseling as well, but finding a good one is so important. Now I need to find a lymphedema specialist!

My scars also,hurt for a few days after chemo. Do any of you use healing creams to minimize scarring?

wallymama

Didn't sleep much last night. The re-surgery on the port hurts more than the original surgery did. Probably from all the pushing and pulling trying to get it turned. Don't like to complain about something so small, so many of our ladies have such bigger problems that it seems petty, but it freaking hurts this morning.

Lisa, your aunt sounds like she was quite a woman. Fortunately, my head is a really good shape. Kind of surprised me, and I for one, don't give a rat's butt what anyone else thinks about my bald head. To me it's a sign that I'm winning my war, if it's killing my hair than it's killing Big Ugly, and anyone who doesn't like it can just look the other way. I actually had a woman stop me in a store the other day and ask if I was fighting the fight. She then said that she liked to give encouragement when she saw someone, because she's fought 3 times. Both breasts and ovarian. She figures if she's still around, maybe she can help someone else. As for the port, it was hurting a little, like a minor muscle ache, and it moved around very easy. When it did move, it sort of gave me an almost queasy feeling. Probably should have gone in last week to get it checked, but I figured I had just overdone it with the Christmas cleaning. Well, no more mopping or ironing with that arm.

Wrenn, how bad is your diverticulitis? I actually had one perforate. Eleven days in the hospital, 4 inches of colon removed, 44 staples, and 4 weeks of levaquin. But I haven't had any more issues with any of them since, thank goodness. And my taste buds are back in full force. I regained the 7lbs I lost the fist week.

Altbraves, I considered getting rid of the $%&^## ex to be therapy. I was a much better person when I shed that extra weight. Unfortunately, I had to try to be civil, and I still have to see him occasionally since we had 2 children. But, on a purely vengeful and evil note, he had testicle cancer a few years ago, and now I can say that I always knew he was ball less. Mean and horrible, I know. I'll put myself in time-out for being so bad.

Northwinds, how long ago did your father have cancer? The new radiation treatments are so pinpoint accurate they can be lower dose so the chances of them causing problems later are lower. Not totally gone, but lower. We really shouldn't waste our precious energy worrying about things that might happen. I know it's hard, but try to put the future worries out of your mind. We'll get these bad boys gone with the surgeries and the chemo, and the radiation will be the repellant that keeps them gone.

Phebe, no need to apologize, we all understand about the chemo-fog. I can't eat oranges, tomato products, drink orange juice or tomato juice because it hurts my tongue. If the pineapple hurts, you should probably stay away from those things also.

Going to try again for the chemo bus this afternoon. The new incision is so sore that it will probably hurt like a b----. Oh well, things have gone so easy until now that it's probably just my time. But the really good news yesterday is that it's shrunk from 8mm to 6.5mm. Go me!!

NorthwindsGS

Wallymama,

Sorry to hear about your port and the pain you had to endure. I had no idea they could flip. Ack, another thing to add to the worry list. I kinda worried about something like the port shifting in me as I lift hay bales and clean horse stalls and swear I can feel the darn thing move.

Hopefully now yours will stay tight and five you me more trouble. Praying for you!

Pam

VirginiaNJ

Paulette- well now I know why T're is ur signature I think I picked the same scarf as you!!!! I got an email yesterday that it has been shipped . Guess they sent them in a bunch as I see Northwinds you got yours...

Wally- oh my goodness about the port I am the one who is so anti port just bc the though of it makes me queasy. If that ever happened to me I don't know what I would do. I ammmm so grateful my veins are totally cooperating with me. Best wishes for chemo today!! And yay you for going out with ur bald head. I always wear a hat.

Lisa - my period never stopped on AC chemo. I also never lost my eyelashes or eyebrows...they just thinned. Jury is still out on TC.....my period is due any day...and so far my eyelashes and eyebrows are hanging on.

Smrlvr- I had a terrible headache the first time- onc thought it was from Zofran? Had the headache the second treatment but much more mild. So sorry you are dealing with that and LE

Amazon- so happy to see you were feeling better yesterday....have been thinking of you a lot!!!!

Snowing again here in the Garden State. Have tons of butter so I hope to bake Christmas cookies today

Hugs to all!!!!!!!!

Palameda

Wally, ball-less ex:love it! Get out of the corner and up on the comedy stage with Lisa.

Melrosemelrose

atlbraves- Thanks for my new moniker--- Fairy Chemomother!!!!  Happy to give support and help here.

You gals are the best!!!!  I love reading all of the posts and see that you are all very connected and helping/supporting each other every step of the way.  Yes, I know some of you will finish before others but it doesn't matter since there is a strong desire to stay together.  Keep pushing forward and before you know it, you will be on the other side.  I'm there and still waiting for you to come join me.  HUGS and minimal side effects!!!!

Bec65

Hi everyone,

These are my feeling-like-crap days...I've been staying caught up and loving all the posts, just no energy to participate. Since I'm done with AC, I've been fixated and practically looking forward to what my MO said Taxol would be like -- mild-at-most nausea and body aches. Body aches like the Neulasta shot? Suddenly not really looking forward to anything.

Re ports and post BMX sensations -- I had my BMX and port put in 2 1/2 months ago and am just starting to get all the feeling back in my chest (both on my skin and deeper in). I can sleep a bit on my stomach, but it feels weird right in the middle on my sternum.

As for my port, I'm considering having a freak out about it right now. I've felt flu-ish for a few days but no fever. But for the past day it has hurt to put any pressure on my port, and that hasn't been the case before. Is it just the feeling coming back? Neulasta? Who told ports they couId flippin' flip?!? I DO NOT want to see the stupid NP for my surgeon. DH says it looks fine, and even the stupid sore on the side of the port (which didn't get treated properly b/c of the stupid NP) looks better, according to DH. Pooh. I guess I should call.

Fingers crossed for good days for all of us!

audra67

Hi all-

Thanks for supporting my 'freak out' and it was scary...!!!  Woke up a little anxious again this am, before alarm of course....but talked myself and prayed myself out of it.  Then went to see a counselor!

I really like her!!!  She went to Dallas Seminary has a degree there, counseling degree, and BA also...so she did her schooling...and she is a personal trainer /exercise also!  Talked for 2 hours and the first visit is FREE!!!  It was awesome!  I cried of course, as I seem to cry at everything, but got my life story in and all of that sadness, and the BC issue, and told her hypnotize me hit me over the head with a bat, whatever it takes, I want to change my thinking, get rid of worries, be relaxed and calm and deal with issues differently...no more freaking out!  So I go again Thursday and will do a 'hypnosis'/ meditation...then again on Tuesday to talk....I am excited and it looks like I CAN change my type A- personality!!  I am hopeful...she also told me to write down every thing that has hurt me or made me angry over my lifetime and then pray to forgive and release that hate/anger over each item....sounds depressing and anxiety filled, but I am going to do it as I DO have a lot of unresolved/unforgiveness issues...

Then I have my ultrasound to see what this lump is at 3!  Will let you know,....praying for the best...and here's new photo today with head wrap done...doesn't quite look like Amazons..but...

Bec65

Audra, you look fab!!!!!!!!!!

I hope your good day continues!

audra67

You are sweet, and I'm so old and out of it that's how I do a selfie!!!  My phone always shows like a dork! 

lisa137

Audra you are gorgeous!

And isn't it great how just the act of taking charge of your anxiety and fears and DOING something about it actually helps alleviate them a little bit, in and of itself? Sometimes I think that may be a part of it we overlook too much: SO much has been taken out of our control, and before cancer we were mostly pretty strong women, in charge of our lives, and with a pretty good idea of where we heading. The switch is ....drastic, and very difficult to adjust to! Taking control of something to aid in you own well-being does help a LOT! For me it's like a reaffirmation that "Hey, I'm still here, and I'm still me, and I'm gonna come roaring back in a few months like I was never "down" for these months, so prepare yourself, world. I will be back!"

audra67

LIsa 137-

AMEN!!!

p,s. had sex yesterday during day, my husband loves me

QuirkyGirl

Audra. You are darling and I'm glad it went so well!! As for how to take a selfie, when you have the camera up, if you have an iPhone, you will see an icon in the upper right hand corner that looks like a camera with two arrows. If you press that, it will turn the camera around inside your phone and YOU should be what is showing up on your screen. From there, you can just click away. I've attached a photo so you can see what I mean. So cute in your scarf!

wallymama

Getting ready to head out to catch the chemo-bus. Hopefully today goes as it's supposed to. Sorry that I seemed to have scared some people about the ports. It's a relatively rare SE so don't stress about it too much. Just figure that if it's rare, and one of us has already done it, then everyone else is in the clear. Just figured that everyone should know so that you can look out for it, and take it easy on the port side, just in case. And Bec, if we can figure out who told the flipping ports that they could flipping flip, you can join me in beating the flipping snot out of them. Audra, so glad you're feeling a little better.

audra67

on ports, my person putting it in sewed it in place to not flip...she said some do not...alas the flipping...

on to my ultrasound, please show SUTURE

ellenkc

There was a comment a ways back about why don't we lose hair where it matters -- like armpits so that we don't have to shave.

Well, here's something to look forward to: I haven't had to shave my left pit since 2006 when I had radiation. So I figure that once I finish this round of radiation on the right, pit shaving will be a thing of the past!

Also, to all the young women bemoaning periods: you make me feel so great about being 61 years old!

Ellen

Bluegrassharp

Lisa137, I had a lumpectomy, but all my surgical sites -- lump, axillary node, port and even my jaw where I had a tooth pulled right after I was diagnosed -- have ached after each of the 3 TC chemos I've had so far. It's not my imagination and I bet it's not yours either! KBee on another discussion board had the same experience, and suggested that the chemo was affecting all our vulnerable tissues, including those that are trying to heal up. No clue if this is correct, but it made sense to me.

ellenkc

Geez, Louise! The things people say!

Just took a call from a potential tenant for one of my properties. We got talking, I mentioned I was little bit limited on doing showings because of cancer, guy starts bragging that his wife knows all about cancer because she has run foundations that raise money for cancer research. He goes on to say multiple times "Oh, chemo, that's the trip to death and back".

I was saying things like "I wouldn't describe it that way", being polite because he was a potential customer, but he just didn't get it. I finally made an abrupt change in topic.

No matter how bad I feel, I don't want someone saying that to me!!!

Ellen