Starting Chemo in April 2014

jhodro

mmtagirl: I have the same situation - with friends coming over. I feel like we always have people in and out. I've pretty much left my hat on except for a few that are here most often. It's more me feeling insecure, I think, than the kids! They have said the same thing, it's just a bald head. They have had a sense of humor about it all, so that helps too. I think it's great that your daughter sees you vulnerable too, they need to know that you're human. I've always hidden hard stuff from them, and downplayed this situation at the very beginning, but that isn't necessarily the right thing to do. Now they know the full story, which is very positive considering, so, they are pretty at ease. My daughters have even said that I should 'play the cancer card' more often, LOL. Happy graduation to your daughter!! Did you know there are some scholarships out there for kids whose parents or siblings are cancer patients?

Jaimieh: On taxol, I lost about 2/3's of my hair after week 3, but then it has been growing in on my head, so i have stubble again, just not everywhere on my head - like patchy. And your kids are going to be strong. Every kid has something to deal with, just like every adult does - - this is just our thing. xo

Oh - and one great thing about being on Taxol in Michigan - - the mosquitos finally avoid me!! Woohooo!!

brigadoonbenson

mmtagirl - Wow, that last exchange should be celebrated!  It shows that you are not keeping her from being normal.  You must be doing something right. 

mmtagirl

Johndro, thanks for the scholarship tip.  I had no idea.

Brigadoon, we all have our moments:-) 

Ok, girl, I did play the chemo card tonight for ice cream.  DH and DD took the bait and went to get us all a scoop. Whatever works!  We all knew it was a scam.

Have a great night everyone.

Lakegirl1

Mmtagirl...darn...wish I had thought of that one!

Jaimieh

mmtagirl way to pull the card.

Jhodro- I sure hope you are right about my kids. . They are two wonderful little people. How is the weekly taxol going ?? I start it towards the end of June. 

Off to take something so I can get some sleep. 

Blueberry4

Jamieh, I still have hair on AC.  It's sparse stubble, but I kind of like it.  My brows are thinning but hanging in there, my lashes too.  My doc said my hair may start slowly growing again about halfway through low dose taxol.  I'm doing 12 weeks of taxol starting in July. Are you doing 12 also?

jhodro

jaimieh: Taxol is definitely not as bad, from what i'm reading as some of the other chemo cocktails. I still am experiencing SE's…mainly: no sleep the day or two after infusion (from the steroid and haven't found anything that works), a bad case of acne (started an antibiotic - but I was prone to that even now in my 40's), some D 2 days after - but resolved with immodium, a constant runny nose (claritin D seems to help), a dry mouth, my taste buds are off (meat is especially disgusting to me for some reason) and fatigue. I try to take a nap a day, even if for 30 min or an hour, and then I'm usually ok energy-wise. I'd say I feel better than my fears of starting chemo, but not definitely like normal. I have blood work every week and my numbers have stayed pretty constant so fortunately, I haven't needed Neulasta. I also take Herceptin and that's all I'll have this coming week/tomorrow. Hope this helps. Best of luck for you too!!

mmtagirl: anything for ice cream, that's what I say!!

Jaimieh

blueberry I will be on the 12 taxol's also with some herceptin and a side of perjeta   I am in for a LONG haul of treatment. 

Timbuktu

It's just a bald head!  What a great attitude!  I wish I could feel that way.  I find myself in constant hiding and then i wonder why?  Am I ashamed?  Am I afraid of scaring people?  I keep buying different hats and scarfs looking for one that will not scream "chemo" on sight.  But I haven't found one.  Every time I see the baldness I think "death" and that people will pity me.  I see it in my family's eyes.  I want to stay inside and avoid seeing it in anyone else's eyes.  But it's beautiful outside and I need some relief.  So I wear a hat until I'm in my car and off my block.  Then I whip it off and let the wind whip through my wisps.

I can't accept this is happening to me.  I've been through chemo before but I held onto my hair and looked the same so I was ok.  As long as no one knew, as long as I looked normal, I could pretend I was normal.

But there is no denying this bald head, these scarves and hats, and what they symbolize.   I'm really not a vain person.  I don't give much thought to appearances.  Yet this thing has gripped me.  

Jaimieh

Timbuktu- I hate the bald. I work with corporations and kids so I can't really let myself go topless. It's hard to explain to someone that has no clue how people view you and the pity. Oh the damn pity looks. I get angry about the pity looks. The thought of growing my hair back makes me want to hide for the next two years. I had a mullet for about a year last time. I am trying to embrace it but I can't help it somedays I am just pissed and sadly today is one of them. I figured the more I sleep tomorrow the better I will be. It will be one day closer to finishing up chemo set one. 

mmtagirl

I have to agree that the worst part of chemo and being bald are the pity looks.  For me, the 24/7 visibility of chemo treatment has been the hardest.  There is no place to get away from it, ever.  I think that is why I had to find my safe place with going bald and find a way to normalize it or I would go crazy.  It hasn't been easy.  And, as I write this, I dread finishing my coffee, cleaning up and deciding which wig to wear to work today knowing I will get at least one comment from someone complementing me on my haircut or telling me I look good in the wig.  Even best intentions don't allow for anonymity.

Jamieh and Blueberry, looks like we will all be starting taxol at the same time this summer.  I will be on low dose 12x, too.  I live in Michigan, too, and was happy to hear from Jhondro that the Mosquitos stayed away.  I will take any liver lining that comes my way.

Have a great day, everyone!

jhodro

You guys are so right about the bald head being the symbol of being sick. I could also hide it before that. For me, and I may have said this earlier, I did the surgeries ok. I was just matter-of-fact, but then the day I wig shopped pre-hair loss, I lost it. Then, my MO said, oh, with taxol, you probably won't lose your hair. Then I did in week 4. Then I spent the week losing it again. And got a buzz and felt better. But going in public, it's such a struggle. I hate when complete strangers approach you - and I have had this a few times - to ask - do you have cancer. Or at the elementary where my son goes - now everyone has to know and people are all curious. People have asked what my chances are. People have told me their cancer relative horror stories. And like you guys, people compliment my hair or hat, depending on what I feel like wearing - I know they mean well, but there is pity. Maybe it's that they see us as too close to them, and it hits home that it can happen to anyone and they are afraid. Who knows. I just don't want that to be my only conversation, and especially not with people who are so clueless most of the time (not people that are close to me, these are casual acquaintances, mostly). I still am the same person with thoughts about issues and interests. When you have cancer - that's all the public seems to see. It's very disturbing, and, I feel terrible for kids who have to endure the public interest. 

On the positive side, going for H only today. My break week - gonna try to really enjoy it!! Happy Tuesday!!

Timbuktu

I think the hardest part for me is not that people make me angry but that I remember how I used to feel when I saw someone who was bald.  I assume that they will feel the same way.  My heart would sink.  Yes, I would feel frightened that it could happen to me.  I would question God and get angry that there wasn't a cure.  And I would see "death" and "suffering" and could not see beyond that, to the person or the hope that this would make them well.  I don't blame anyone for being horrified because I was horrified.  I think it comes from a good place, in a way.  It's empathy.  There but for fortune and all that.  But I can't help feeling like a leper...I know what they are feeling and why and I hate to be the cause.  So I hide.

Reading these posts has helped me, I think.  Wigs are the way to go.  My husband loves my wig.  But it gives me a headache!  I think its the closest look to "normal", though, so I'll have to get used to it.  I feel as though I'm wearing a mask.  I'm afraid it will slip off.  I really hate having anything on my head, always have.

Footballnut

I went to a look good feel better class last night. 2 hours. The first hour was all about the makeup and application - the 2 nd was about wigs and scarves

So here I am in a group of approx 12 women - the majority fighting breast cancer when I hear the idiot beside me saying that she's so thankful that she's not triple positive as it's a death sentence. 

Hi there!!  

As I always have to say something I turned and told her that I am triple positive and that I'm going to rock this

Oh came the response. I'm so sorry

Whatever!  Here we are sisters on a journey yet that does not change who we are. Of course later she went on to volunteer to model the wigs and put on a show about not wanting anyone to look at her because she'd look stupid and how bring bald will make her look like a real cancer patient

Good one again as there was a beautiful woman in the group who came to the class bald. No wig. No scarf. Nothing. And she rocked!!

The class itself was okay especially for someone like me who for my whole life only pit on black eyeliner and eyeshadow. Concealer?  Foundation?  Pressed powder?  Huh ?  Lol

They got me to put on lip liner and lipstick. That was it !  Lol. They tried !!  Lol. Overall the class was very good

I would say that we got approx $2-300 of high quality makeup, cleansers and creams including suntan lotion. The volunteers packed it up in a box before we left

I don't see cancer as a disease. I view it as a condition. I've been fortunate to live 50 years with minimal health issues. My hubby has been on meds for colitis for 15+ years now. Like breast cancer there is no cure. There's no cure for the common cold either. There's no cute for diabetes and lots of other things. Yet we putter on

So I try to view breast cancer as a condition that I will have to live with. It's not a death sentence and hopefully I will have a good quality of life like many many women do. 

My hubby told our neighbour about my cancer yesterday. While he said sorry he added that his family knows cancer including breast and that all are survivors. He also mentioned a woman up the street who has also beaten breast cancer

When my time comes hopefully many many years from now ( I have  plans until my 80s), all I want is not to die forgotten or alone

At times I have visions of being hooked up to machines and tubes not being able to eat or remember my name. If that happens hopefully the meds will be good and the rock n roll will be cranked to 11

Have a good day all!!

MameMe

Footballnut, Get those last wishes written down and filed with your things, and specify the bands you want to hear! If you last for 35 years, the fam might not remember who your favorites were. I am inspired to think about the way I want to be treated if I get quite ill at the end, get that written down and in a safe place, then forget about it. 

I had a good experience at LGFB, I was the only patient there and the  beautician was a total sweetheart. I kind of like makeup anyway, but this really felt above and beyond, like a real perk. 

Timbuktu

This goes under the category of stupid people comments.

I never wear make-up.  Can't stand the stuff.

I went out to lunch with a friend.  She looked me straight in the eye and said "I would love to see you with some make-up on.  Just lipstick and blush would be great."

Anyone smarter than I with a good comeback?   lol

I am sure that my color is not as good as it once was.  Chemo isn't becoming.  I bet she thought she was "helping" me.  But I spent days trying to come up with a good comeback.  Any ideas?

Footballnut

Timbuktu my suggestion is putting on some kiss makeup and going to see her ! Lol. 

I remember when I was a kid I asked my history teacher if I could wear makeup to class. He said sure. I came to class dressed as gene Simmons!!  I think I was 14 then

Mameme you are right. I should write it down. In 35 years I'll forget the bands too!  I'll forget in 5 !!  Lol

Timbuktu

LOL!  I wish I had the nerve!

brigadoonbenson

I am thinking that - "I understand your curiosity and if you give me your number I will call you when I have anything I want to share."  

Timbuktu - "if I wasn't a natural beauty I would have developed that skill.  Good thing I didn't have to." (With an innocent smile)

jhodro

Timbuktu: wow. That is so not the right thing to say. I really will never, ever understand people. I love brigadoon's comeback! I can never think of them in the moment!!

Footballnut: I again, can't understand people. 

If I could have any super power it would be the ability to mute stupidity. 

SharonDe

Wow - lots of crazy things people are saying.  The gal at Footballnut's class takes the cake.  Sounds like someone with no filter and a need to be the center of attention.

I made a couple of insensitive comments to friends who were helping me sort through early stages of my diagnosis.  Makes me cringe now, but also helps me to realize how someone unfamiliar could easily say the wrong thing.  Doesn't excuse the just rude comments like "how long do you have?" or "what did you do to get breast cancer?" ...

Timbuktu - I don't wear makeup and don't intend to.  People can take me as I am - or not. I like Brigadoon's comeback and Footballnut's idea of the Kiss makeup.

Footballnut

after sitting on my ass in our kitchen since 10 THIS MORNING I finally forced myself to walk40 minutes on the treadmill. So tired today!!!!!  Still have done dry mouth and feel like eating junk food. The thought of eating healthy makes me feel sick today!

The idea of a small piece of lettuce with a bowl of French dressing and croutons sounds great to me!!  Lol

I better be able to keep awake for the hockey game tonight!!!!

Timbuktu

Forty minutes!  Impressive!

applepop

Footballnut..40 mins on the treadmill. That's awesome. I have pretty much stayed in a vertical position today. I even layed down on the ride to get my Neulasta shot. This is so not like me. Round 3 has been tough on me. I have had sick kids and fighting off a cold as well. 

SharonDe

40 minutes on the treadmill!!!  Excellent.

And, I was so proud of myself for staying awake all day (so far) - mostly in a prone position, and walking the dogs a few times.  But, hey - progress is progress.  

Swissmiss

Better late than, never, right?  Last week I completed the 4th of my 8 chemotherapy infusions, but I arranged to meet with a new oncologist tomorrow.  It is liberating! 

I'm sure some of you have read about my waiting room nightmares with my current MO--my appointments usually last about 3 hours, with the vast majority of that time spent half-naked in the exam room just waiting, and waiting, and waiting.  I realize that every single time I have an infusion, I end up posting these really angry CarbringBridge journals detailing all the waiting and the incompetency of the day, and I am sure the negativity is eating away at my "cure."  When I first met my current MO, I thought he seemed competent and smart, and convinced me I'd be getting wonderful care.  But as my treatment plan has unfolded, I find his nurse is incompetent (she forgets my appointments and lab orders...the lab techs cannot stand her), and the doctor himself is full of excuses when I allude to the fact that I wait three hours for my 15 minute pre-infusion appointment every.single.time.  Yes, the excuse has been made that there "were really sick patients that needed to be tended to," but every time?  I feel like I'm the "easy" patient who follows the rules, takes care of myself, and I'm the one they can so carelessly put on the back burner every.single.time.  I've had enough, and I'm hoping my appointment tomorrow guides me in a more positive direction.

Has anyone here ever thought of or actually changed doctors midway through your treatment?  I'm worried that if I change it up, I might have delays in treatment.  

Tomorrow I plan on 1, asking for the oncologist if he agrees with my treatment plan (because I secretly wish he'd say dense dose Taxol is NOT what he would suggest), and 2, even if I'm heading into eight more miserable weeks of chemotherapy, I want to be in a place that is efficient and caring, a place where I can feel positive about my treatment.  

It's so nice to see all your photos...I wish I was brave enough to post a picture of myself in all my bald glory  Thanks for being such a wonderful inspiration, you beautiful girls!  

My SE's have been terrible...the fourth round of AC did have cumulative SE's, as they are worse each time.  I hope and pray that Taxol is kinder to me.  Although I'm set to do dense dose, which I suspect is more "hard core" than the weekly version.  I'm excited about tomorrow, hopeful for the first time in a while.

Hugs to you all! 

applepop

SharonDe- I am proud of you too. It sounds like you accomplished enough today. You walked the dogs.

Swissmiss- I wish you the best of luck with the new onc. I find myself getting aggrivated having to wait so long for each appointment. I like my onc but wish the scheduling was a little smoother.

brigadoonbenson

Swissmiss - When I first started down this road I was going to Dana Farber Cancer Center in Boston.  They have gazillions of patients every day.  There were lines everywhere and, yet, each department was efficient and friendly.  I never waited more than 15 minutes for my MO and even less at the labs and testing centers.  There were people there far sicker than I and yet I always felt like the most important person they were seeing today. 

I have moved on to a local MO who is working with my DF MO because my treatment is now standard and much easier to get close to home. 

I think you are being misused and I hope you can find a solution that gives you peace of mind and more time to concentrate on the times you are not in medical offices.  Good Luck.

Tinkerbells

you know - what I hate most about being bald is the inconvenience of it all. I don't have the gumption to go without wig, and it's getting hot. Being bald is not only a public reminder that I am sick, but how inconvenient this while damn thing is. The doctors appointments, the worry, the surgeries, the days spent feeling like crap. The baldness is the icing on the cake in my opinion. 

Seems like we are all feeling things at the same time!  And the triple positive comment! Wow! And to ask to see someone so weary from treatment to wear  lipliner! I'm afraid my response would have been kiss my grits!

Jamie- think you asked- I have stubble with AC. It's nothing worth showing, but again, maybe it will grow back a little once I start taxol? Who knows?

Trina - good for you for switching. Not easy and you did it! And from what my onc says- taxol has less nausea, and in my book that's a huge plus. Also means less steroids, from my understanding. And for those of you who mentioned- I too can "taste" the AC- I always thought it was the cytoxan- makes me gag to think about it.

Felt good this morning and went to yoga class, came home and crashed. Been useless all day. One day at a time.

When do we start feeling like we can come out of this and live again?

I miss the old me. One day at a time.

Timbuktu

wissmiss, I think you are doing the exact right thing.  If more people demanded good treatment there would be more of it.  I live in Chicago but flew to New York for my surgery and treatment.  It's a coincidence that you are writing this today.  I just got off of the phone.  I'm being treated locally now and I can't tell you how many errors I catch.  It's not right.  They are sloppy and careless.  At Sloan they are the ones to catch the errors.

I was just making a follow up app at Memorial Sloan Kettering and the clerk was so fast, so efficient she took my breath away.  Before I could find my app in my app book she found it and told me what to do.  It's as though everyone there is on a caffeine high.  Then I talked to my local hospital and she was so clueless!

She told me I hadn't seen my onco since Oct.  I told her I knew I had because my hysterectomy was Jan 29 and I discussed it with him.  She insisted that I had not been there since oct!!!!  How stupid can you be?

And these are the people I am charging with my life?

Twice they have given me an iodine drink when I've told them repeatedly that I am allergic to iodine.

I feel as though I am on my own.  The first infusion they didn't tell me to take the morning steroids.

I called the day before to make sure and the dr didn't mention it either.  When I went in the next morning the nurse was angry at ME for not taking them.  She called later and told me she had told me.  I have her message on my answering machine, no mention of morning steroids!

I'm sure we all could go on with these kinds of stories but bottom line, you have to watch out for yourself.

Sloan isn't perfect but  SO much better!

I have a CT scan in the morning... prayers appreciated!!!