March 2010 Chemo Start

Joj129

Hi Everyone!I hope you all had a great day.

I go for my next infusion tomorrow. I really hope my white blood cells are up. I hate the thought of putting it off another week. I'm trying to stay calm but my heart is palpitating almost out of my chest.

My niece fixed my wig, whose name is "Bambi" and it looks so much better. Dublin today was my first day out with her too and the world didn't end. I was happy.

Les, I totally understand what you mean. I love when someone asks me how my husband or sons are doing. My husband has had many surgeries (thankfully not life threatening but very invasive surgeries) and I have always said it's harder on the person watching than the patient. You can see your loved ones expressions of pain, fright, etc. but they can't see their own expressions and now I know I think I look cheery all the time but that is impossible! So now that we are going through this the tables have turned. Out of the corner of my eye I see him staring at me with worry and fright on his face, totally breaks my heart. He doesn't know I see it, he is my biggest supporter and the love of my life. I was going through some of the other sites on here and found a site for men caregivers/supporters? I think you should read some of them and see what they are feeling so you won't feel so down about having the feelings you are having. Hang in there. Just remember she loves you for the way you support her.

Good luck Mama! I'll be praying for you.

Barb, I am so sorry for what you have been through. I can only imagine going through that with your husband and now having to deal with it yourself. I'm glad you have such happy memories and holding that in you and keeping that from your husband must have been hell for you but was the best thing. As for the hair, 3 days after my first chemo my whole head hurt so I figured it was mind over matter. It stopped for about 3 days until it started last Friday with a tingle here & there, it hurt to lay on my pillow. So it started last Saturday. Please remember, no matter how much you think you are prepared for shaving it, it is still traumatic. I kept telling myself it will grow back, cancer is gone, I will be better than ever soon. Today was a better day for me with it, just weird. 

I'm so happy I found this site.Take care everyone - you're all in my prayers!

xo

horsedoc

I guess I've been pretty lucky since my head didn't really get sore while my hair is falling out.  I shaved it a few days ago.  Sometimes the bandana or hat does make it itchy because I still have some stubble.  Of course it comes out while I'm sleeping or if I towel it or if I pull on it.  (That seems to fascinate people, how it just comes out when its pulled on.)

I too have my second TC tx on Friday.  For some reason I think I'm dreading it more than my first tx. Does that happen to anyone else?

hmh23

Dear Horsedoc; 

I have been using a lint removal brush to get rid of some of my bristle and it really seems to be working.  I don't wake up with much on my pillow.  I too am nervous about my second treatment which is Monday.  Know that we're thinking of you on Friday and pray that it will go well.

LillyC

Anyone else just plain "weepy"?  Today was a really weepy day for me.  The first I've really had and the tears came quickly and freely.  Perhaps they had all just been held inside for so long that they had to be released.  Note to self: Dry those eyes.  Tomorrow will be a better day!

frosty1

Round 3 done!  That means half way through my chemo cocktail.  Then I just get the straight shots of Herceptin for a year.  I talked with my onc doctor again today about my elephant legs.  He seemed to think it was the Taxotere.  My onc nurse suggested drinking lemon water the morning it starts as lemon acts as a natural diuretic(sp?).  So will try that in 2 weeks.  Nothing new with this round ... same as the last.  My onc is very happy with where I'm at and my blood counts -- so far no neulasta!  Trying to stay positive and upbeat.

Calm day to everyone going for their next rounds this week.

horsedoc

thank you, hmh23! 

LillyC, I have had days like that too.  I think it was about a week after my treatment.  The important thing is that it doesn't last for days; hopefully after a good night's sleep you will feel a lot better. 

LillyC

Thanks horsedoc...ironically it is exactly one week since treatment!

mamaof3bugs

I made it through chemo #2!  The SE's have come much quicker this time around, the headache and ear ringing were almost instant.  I am half way through my AC yeah!!  I hope everyone has a SE free night!!  xoxo Angi

hereandnow

Horsedoc, I was worried about number 2 as well, and really, apart from them having trouble with finding a vein it went the same. I have found this time though I'm more tired, and yesterday was just completely flattened.

And Lilly, I have also been a bit down this week, I think perhaps just the whole reality came up on me where I'd been charging through and "getting on with it". The hair has thrown me a bit, especially because I haven't bonded with my wig.  I'm feeling a bit brighter today (day 6), I've scrubbed my head with a face washer, Still have scrubby bits left, and may try to find a lint roller, but I am off to the wig shop to find a better "fit" for me.

warm hugs to everyone

Lisa

teemee

Hi all,

Wow, so many posts, it makes me feel even more blessed that we have this place to come to  

I'm just sitting here hopped up on dex. and waiting for tx#2 at 930 (in 8.5 hours). My mom is actually sleeping on the couch about 10 yards away. It's amazing--if nothing else, this bc crap is helping us form a bond where we didn't have much of one until now. And we're far enough away from age 18 that we can talk about things like her undiagnosed depression and me isolating myself. This is her first time ever staying with me! 

To follow up on what some other people have been saying, my SO took me to my first tx. Mom takes me tomorrow. My sister and aunt take me for #3, and my best friend for #4. People are so willing to help, and I think it's much better not to burn anyone out. Plus, most people really like to help.

Want to hear something funny? I love my head . It's really a nice shape. And I do not feel self-conscious at all so far going 'commando,' although it's still cool enough that I usually don't want to. This is so unlike what I thought I would feel. I didn't want people to look at me with pity. Instead, I just feel confident--and if anyone has a problem with my patchy stubbly scalp, that's what it is, their problem. I have NO idea where this came from but I am so grateful.

Joj129, welcome. I know what you mean, I'm fed up with the "think positive" brigade. I would like to offer up an idea to everyone though. Be as kind to yourselves as you would be to someone you love very very much who was in the same situation. When I pretend it's happening to SO, sister, etc, suddenly I feel more expansive, less anxious, it's hard to explain. I guess I just see it from a point of caring for myself. I don't know if that makes any sense. Steroid-induced insomnia can be so tricky

To horsedoc and others coming up on #2, I feel worse this time too. I am not as anxious for tmw as I was for #1, but the dread is much worse. I feel perfectly healthy, it's just so hard to pay to go put myself in a chair and get sick. I don't want to be flat on my back for a week. Yuk.

I'm off to medicate and hopefully fall asleep. Good luck to everyone having a tx in the next few days. You are on my mind and in my heart!

I love reading all of your posts 

hereandnow

teemee I think you hit the nail on the head regarding that paying to make yourself sick thought. It so goes against our instincts to not consciously hurt ourselves, and avoid things that make us really sick. That stuff is hard wired genetically, so to go against it takes lots of gumption - we are gutsy ladies.

Here's cheers to us.

Dublin4

horsedoc,

I too find myself nervous for #2 on Friday but then we will be half way done!  Wow that is huge.  I hope you have minimal side effects and do well.   Just took my steroids in prep for tomorrow.

Best to all....the head feels sooooo much better, I am actually glad I did it last night

mamaof3bugs

I am now day 2 after my second chemo (DD AC) and I am feeling better this morning than I was yesterday.  I'm still really tired but my anit nausea meds are working well.  I forgot to mention yesterday that my labs came back fabulous yesterday...my nurse told me that not only would she be able to tell I was doing chemo but that some of my numbers, including my WBC, were better than someone completely healthy.  So all of anxiety was for nothing.  I am going to be laying low the next few days and then I hope to be able go back to my daily routine, modified of course.  I think I may have offended some with my post about sex and I apologize if I did.  Hope everyone is doing well.  Angi

hmh23

Hereandnow & Dublin4; I love this quote, "All side effects are temporary but wellness is for a longtime!".  Together, we'll get through the SEs. 

Angi; Thx for the post on AC#2.  Glad to hear your blood counts were so great but especially glad to hear you're handling this treatment well.

Heather

sandiek9

There are so many good posts that I want to respond to each of you! I just don't have the mental acuity to scroll up and down and find your names and get it all right!

So I'm going to write a synopsis to you all. About that positive thinking thing; people really do take it too far. It's enough to make me angry. Crying is good! We deserve to cry. If we don't keep our entire range of emotions we we can't feel the real joys of life. It reminds me of a Franz Kafka quote I love: You can hold yourself back from the sufferings of the world, that is something you are free to do and it accords with your nature, but perhaps this very holding back is the one suffering you could avoid. 

I'm on another forum for Lymphedema and there's lots of discussion about this. and how annoying the "stay positive" lectures are.  Here is a interview posted by a fellow bc cope that I think we all need to ponder:

Question from
freebird: Can you cause your cancer to come back just by being afraid
that it will?
Answer —
Rosalind Kleban, L.C.S.W.: I am glad that this question was raised,
because I'm sure that is on the mind of the majority of people. It is
a very popular notion in our culture today that if you have a positive
attitude you can get rid of your cancer, or that you never get it or
that it doesn't return. If you think about it, that notion is truly an
oxymoron. An oxymoron means two things that don't go together—like
"jumbo shrimp." The reason I call it that is to think about telling
somebody what is the worst news of his or her lifetime and then ask
them to be positive just doesn't make sense. Having bad feelings and
down days is neither good nor bad—it's just normal. The only people we
ask to have a positive attitude at all times are people who have had
cancer. I can be miserable all day long and nobody is going to
reprimand me about being positive. You only 'have' to be positive if
you have cancer.

Having that philosophy or notion or belief is like living in tyranny.
What it does to you as a patient is that on days that you are down or
depressed or sad or anxious or worried—which is normal—you will feel
even worse because you have accepted the notion that those are bad
feelings. You need to work hard to get rid of that notion. It is not
fair. It is putting a burden on the patient, while it serves many good
purposes for the people who are saying it. If you are going to be
happy and positive all of the time, then I don't have to worry about
you. It also leads me to believe that if I am positive I will be fine.
The philosophy serves everyone except the patient.

You need to know that people will tell you that you need to be
positive. You need to be prepared in how to handle that comment coming
at you, and that is something that you want to do in a way that is
comfortable for you. What I think works is that when someone tells you
to be positive, suggest they walk in your shoes first. And inform them
that when people speak to you that way, it's really not helpful. You
need to protect yourself as much as possible from that theory because
it is burdensome and hurtful. A bad attitude will cause only one thing
and that is a bad day. The best reason for having a good attitude is
that on that day you will enjoy yourself. But neither the good nor the
bad attitude will affect the illness. It will affect the quality of
the day that you are having.

Your fear is just the natural outcome of having this diagnosis. It
will not cause the cancer to come back. I work with a thousand women a
year and I have never met one that doesn't suffer from fear, either
enormous or very enormous. It's normal. Not bad, just normal. It will
have no impact on the course of the cancer.

On Wednesday, June 19, 2002, our Ask-the-Expert Online Conference was
called Dealing with Breast Cancer Fears. Rosalind Kleban, L.C.S.W.
andMarisa Weiss, M.D. answered your questions about aspects of breast
cancer that cause concern.

Kayne

Well, I went to the gastroenterologist this morning for my liver.  He could have a better bed side manor.  Scared the hell out of me-  then clarified what he was saying.  All my counts were fine before surgery.  After surgery some were elevated then came down.  After Chemo they were very elevated- no chemo- wait another week.  He is having me do a liver ultrasound, liver biopsy (what???)  and more blood work.  Getting a little down about all this.  I can deal with the "normal stuff"  low blood counts etc.  But a liver biopsy!!!  Something is toxic to my liver and basically he is ruling things out.  He does not believe it is cancer, thank God.  That's what I had him clarify!  He is not sure it's the Chemo per say since # were elevated after surgery.  However the chemo is agravating it.  So went for blood work for my onc.  Nurse had to stick me twice.  I'll find out tomorrow about chemo on Monday.  May have to change my cocktail.  Oh and speaking of cocktails--no more of those either!!  My only vise is a glass of white wine and now that is taken away too.  Oh well, this too shall pass.  I just want to move forward with no bumps. 

Joj129-- I know what you mean about the "positive people".  I have one friend who will say, "oh that sucks"  and sometimes I am so glad she did.  Cause it does!!  My mother is constantly telling me my treatment is wrong, it's too much, too many tests.  She also got mad when I bought my wig and told me to take it back!  Ii wasn't going to lose my hair.  Well odds are I am and I'd rather be prepared.  By the way, she doesn't have a medical degree.  And we ususally end most conversations with her crying!!!

Wishing everyone a good day with minimal SE!!  The sun is shining here so that's a plus for me. Maybe I'll go for a walk. 

undecided8

Lilly C: Yes, I've definitely had a few of those days. It's OK and perfectly normal. Sometimes you just HAVE to get it all out. I've found that when I have one of those days I feel SO much better the next day. Thank Goodness, it usually does not last very long. Hang in there, You'll be done before you even know it.

Suzanne E.

sandiek9

 Can you stand me writing some more?So Lilly/Linda, when you have a weepy day I believe it's painful, but gets out your sorrow for your situation so you can have some happiness the next. It hurts to cry but you don't need the guilt that some people will add to it. It's normal! You're a complete soul and crying and laughing are all part of the normal continuum. I love the wig names! I'd love to have a tea party with the 2 Wandas, Lola and GI Jane, and everyone in between. I like the confidence we gain (and the thought processes we go through) as we find ways to deal with our hair leaving our heads. We are walking ads for cancer, and represent millions of others across the world. Walk tall and proud in this temporary state. I feel like I've earned this head and am more compassionate for it. You can never know what it's like until you get there. Good for each of you for your coping systems! Had tx #3 of AC, and it went well. I asked for an extra bag of fluids since my refux (heartburn) has kept me from drinking as much water as usual. I also started Zometa, was able to cut my steroids in half, and dropped the benedryl completey. My reluctant port causes all kinds of activity - seems to work best for blood return when I'm standing on my head. All went well, I feel fine! Lunesta is an incredible sleeping pill - soooo different from Ambien. I sleep like a baby, and awaken like a cat, stretching and yawning. Highly recommend it!I could go on but I'm thinking no one's reading anymore... Again, thank you all for being there and sharing. I enjoy my coffee and your postings every morning. You are my March sisters! (Hmmm... Little Women?) I wish each of you well in this battle; you make me feel I;m not alone.xxoo Sandie   

GurleeGirrl

Thanks for your responses.  I have seen the doctor and I have develop Neutropenia   and since I'm susceptible to viruses, I now have cellulitis on my face!  UGH!!! Not only am I bald and bloaty - but now I have a disgusting red rash all over my face.  Perfect.  And I can't leave my house until my next blood draw on Monday afternoon. 

 Ok - enough complaining.  I will get through THIS too.  Just miss my normal life.  

Hope everyone is handling SE's with ease. Keep Marching Ladies :O)

Lesinindy

Tid bits from the other side of the drip. 

Sandek9 thanks for the post, the wife had her weekly Herception infusion today and we found out that her blood counts were down again, seems like there is a 14 day pattern after the TC of the TCH treatments. I talked to one of my co-workers today and she gave me the positive thinking talk and I found it most distressing. I watched today a family right after they had been given some really bad news, the daughter was in tears and the wife went into another room (out of sight and sound of the husband) and I could hear her crying for some time. My friend that is getting treated there is looking much worse and another gentleman that I know is terminal looked to be on his last legs. I found it hard to see anything positive about the morning today.

It occured to me that maybe it is ok to not be positive all the time. I don't wish bad things to happen to anyone or for my wife to suffer like others I see, but I felt down, I cared for others and it depressed me. That is part of life and whether I like it or not, all is not rosey and great. 

We have the Race for the Cure this weekend in town and I have done the 5K in the past. I think it is just great to celebrate and cheer those that have overcome this condition and have gone on with thier lives. I will cheer along with the rest of them, but not this year. 

On a positive note, I looks like the wife has accepted the "no hair day" look and has decided to wear head scarfs at work. I think that is great and a positive step into acceptance. She looked a little funny with the hair piece, it just did not fit her right. I has taken some time but I am getting used to her new look and it is not as big a shock anymore, now there is a little bit of positive for today. 

"feeling bad is not abnormal" This too shall pass!

hmh23

sandieK9;

I've found it difficult to stay positive all of the time.  I really had a bit of a 'pity me' party when my husband shaved my head. It was a good little cry that lasted a couple of minutes.  I felt great relief after that and somehow it has given me more strength. 

What I find most difficult are the phone messages I receive especially from family members asking "how are you doing?" There is an expectation in their voices that I am doing poorly while I am doing great.  I really don't feel any different than I did before my diagnosis and for some reason they don't seem to understand that.  Yes, there are a couple of not so good days, but now I just plan on having flu-like symptoms for a day or two.  I can live with that if I want to live!!

Sorry for squawking but I just needed to get the phone call thing off my chest!

Gurleegirrl; Order movies from Netflix, sit back, give your self a manicure or pedicure, relax, order takeout (delivery) and pamper yourself this weekend.  You deserve it!!

Heather

hereandnow

Hi everyone, and thanks for wise and kind words.

I'm feeling alot better today - the cloud has lifted, I do think it's tinged with the steroids, and the cyclophosphamide.

Gurlee girl, neutropenia is low neutrophils which are the white cells that attack bacteria not viruses. Cellulitis is a bacterial infection not viral. I'm sure your docs have you on some antibiotics if they've diagnosed cellulitis. Hope it gets better soon.

Feeling brighter, I'm off today to do some house shopping things, although I will be cautious about what I'm touching, and if there are any coughers around as white cell nadir is about today. My onc told me the neulasta doesn't stop the white cells dropping, just shortens the duration that they're low. Interesting.

Dublin4

hmh23,

Shaved the head last night and I feel remarkable stonger then yesterday and its good timing heading into # 2 tomorrow morning.  I will be half way home.....50% done!!!!

As for the pity party its OK, have one just don't stay to long.  Like in college when you were at a bar and they would switch the lights on and off to tell you it was time to go home.

Don't let the lights get switched on....go back to the good place before to long.....then when needed cry again!  

Hope all is well and that everyone has a better tomorrow!!!!

Charley

Gurlee - I'm sorry you've had these side effects! I don't have the rash but I do have the bright red cheeks and I think the same thing when I look in the mirror -- bloated, bald, red cheeks and my eyebrows seem to be thinning.  Ugh!  That will be the next major loss!

I, too, have been weepy off and on since my last treatment. Side effects lingered much longer this time and were much more severe. But I'm better today because I am feeling better.  Yes, it totally goes against our instincts to hurt ourselves ... totally a wired thing. I am scared about my next treatment on Wednesday. It will be my 4th of 6 in the dose dense regime ...

Since you all have named your wigs, I will name mine --- Florence!  It looks like Florence Henderson's hair with the little flip (remember Mrs. Brady?)

Hugs to all, Charley

Joj129

Hi Everyone,

I too was anxious about my treatment but went it well today other than having to take the needle out of one vein and finding another.

Lily C - I feel like I can cry at the drop of a hat. Crying is a good thing - cleans out your mind and soul and helps you to move forward. I don't like to cry in front of my family or friends but find most times, they want to cry with me. I know I would cry with them if the tables were turned.

Thank you so much for addressing my always being "positive" issue. Thank you to everyone who answered my issue. It's good to know I'm not alone with my feelings. Whenever there is a step back in treatment or diagnosis I allow myself a "pity party" and then can move on. What a great post that is Sandie. I also don't think anyone would get bored with any posts. That is what we all want to read. 

Mama - no worries. You need to  get your thoughts out there too.

Kanye - I bet your mother feels helpless that she can't fix this for you. That is how I would feel with one of my sons/nieces/nephews. It's so hard not to know how to fix things. Tell her you need her to be strong for you and not to end every conversation crying. You have to do what is right for you and I think buying the wig was the right thing. I wanted to be prepared too and when it happened I was.

Teemee - what a door has opened for you and your mom.

You are all in my prayers daily. I hope everyone does well.

 Jo

horsedoc

I would like to respond indivually to everyone but I'm sure you guys can figure out the posts I'm referencing.

First of all, thanks to all about the "stay positive" things.  I am generally a very positive person especially on the outside because I don't ask for pity.  BUT this is a crappy situation we are all in, and we all realize that, but we do what we need to do to get through it. I think it's healthy to feel bad sometimes, it keeps us from feeling "fake" and emotionless. 

 I have had of compliments on my head being a nice shape.  It's so funny.  For some reason, at some times I'm not too self conscious about going commando either. (other times I am.  I don't know why.)  I have a little stubby but some patchy areas, but I've still gone a couple places without a hat. I've been wearing a bandana and hat so you can still tell I have no hair but I think it looks fine.

I'm feeling good right now because of the Decadron, except for the scratchy and slightly sore throat, and I'm feeling a little better about going for Tx. 2 tomorrow.  I too am really worried about them hitting my vein.  I do not have obvious veins in that forearm!!  

But yes, I'll be halfway done tomorrow!!  Good luck to the others getting treated soon.  Minimal SE for all!

hmh23

Welcome Florence!  I loved Mrs. Brady growing up.

Heather

frosty1

Gurlee -- sorry to hear about your enforced home stay.  Hopefully things will get better for you.  It sucks to have everything feel like its going sideways just when you start to feel better.

I agree on the positive thing.  I'm generally a pretty positive person and have a good sense of humor.  That has helped me.  But when I'm down, I'm down.  What really irks me are the people that look at you and say "wow you look good" -- like I should look like I'm dead.  For crying out loud, I'm just going through chemo!  Oh well.  Pity them.

Haven't named my wig, but have gotten used to it after 6 weeks.  Someone was surprised the otehr day when I said I had a wig.  That boosted my confidence.  I do scarves on the weekend; trying to be more confident about scarves at work.  I'll get there.

Day 2 post #3 (half way through my cocktail).  Anotehr day and a half then I get hit by the bus.  Enjoying it while I can!

Dublin4

Good luck to everyone going today....my wigs are Raquel (since it is a Raquel Welch wig) and Libby.  One is a little more sassy (Raquel) and the other is a little more tame (Libby).

Prayers and blessings to everyone!!!!!!!!!!!

We can all do this and yes it is crappy, but we can do this and time is a great healer...it will be done and there is light on the other side....keep moving forward and remember all se's are temporary.

Good luck to all!

Julia257

Good Morning Marchers, where to begin...so much to comment on from all of your posts.  First, let me just say as always, my best wishes to all, I hope and pray all of you are doing well.  I think the positive attitude discussion is very interesting. I think it's beneficial for the one who sympathizes for us to put on a positive spin.  After all we are each other's keepers.  Sometimes I think we forget how powerful words and of course actions are.  I know I belabor this point but we need to be kind to each other.  We know without a doubt that bad news, negative stress, etc, is harmful to your health.  So I think we have to be careful with sharing that kind of information.  Wouldn't we feel even worse if anything we said had such a negative effect on another that it would cause them to suffer?  I'm not saying that we shouldn't own our problems, absolutely not.  We own it all, the bad, the good and everything in between.  We need to be realistic and honest especially with ourselves.  Good on all of you ladies that are honest enough to go commando!  Kudos!  Back to my point of how we affect each other...if anyone is still with me...last week when I was just about to kick it and enter the twilight zone with the anaphylactic response to my 2nd dose of Taxotere, and the team hustled and bustled and immediately brought me back, a man having a procedure in the other chair had a hypoxic reaction, was about to faint in empathy for me.  Imagine that, a complete stranger, so concerned for my well being, out of his control, his health was affected in such a negative way.  Anyway, substituting Adriamycin also with the Cytoxan for my 2nd treatment went without incident.  Frosty, if you would like to make that change in my profile, thanks.  Take care, have a great weekend.  Julia