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Checkin in and a tiny vent

bluesmama
Posts: 124
Joined: Aug 2014

Hey folks,

I think the last time I posted I was pretty distraught. My first cisplatin infusion was a demoralizing experience. Combined with daily radiation, I was pretty fed up with life. The second infusion of cisplatin was easier. I don't know if it's because I was vigilant about taking my meds around the clock rather than in the morning and in the evening or the tapered steroids or the just knowing what to expect... probably a combination of all three.

I'm finally done with the first phase and other than my gums receding a bit, some bladder pain and fatigue, I've come out of it relatively unscathed. I'm getting a quick break before I head into the next phase with Carbo-Taxol. I hear it's probably going to be easier physically but obviously losing my hair will make my diagnosis very public to family, friends and strangers and has taken a toll on me emotionally. I'm trying to be brave about it but I find myself jumping from feeling sad and self conscious to "I can do this."

Good news is my bloodwork isn't bad after all that chemo and radiation and it's only been two weeks since treatment ended. My CA 125 went from 117 before surgery to 6 after chemo-radiation. I'll take this baseline wholeheartedly. I think what worries the most is the Carbo-Taxol may not be of much benefit at all for a low grade endometrioid andenocarcinona lurking somewhere else in my body and is it worth the long term effects. I keep wondering and getting upset about it. And of course, being sick for another 100 days, missing so much work and giving up on a lot of things I wanted to accomplish is frustrating. 

Anyway, I read everyone's posts all the time. I just don't contribute much. But as always, you all are inspiring and give me hope that no one I know in real life can because they don't have this disease. Happy New Year. Here's to a better 2017 for us all.

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

Hello,

I just have to say if you can't vent to us about your real feelings than who can you vent too? I know what you mean I sometimes feel I can say I am gonna kick cancers butt, to crying and feeling sad about it all. I think that is very normal. I know what you mean about the carbo taxol combo this is going to be my second time around and I dread losing my hair all over again. It's ok to be realistic just try not to let the negativity consume you, it's doesn't do you any good, I am talking to myself as well. This stuff stinks!! God bless you into the next phase.

Tami

MAbound
Posts: 907
Joined: Jun 2016

Bluesmama and Tami, you are both so strong!  Sometimes the hardest part of treatment is the duration of how long it all goes on and consumes your life. It's so hard mentally as well as physically. It's hard enough getting through chemo once, but facing a second round of treatment has got to be harder because you know better what your in for and it's no picnic. You both are handling what you are going through with such grace and strength...I'm in awe. I wish I had a magic wand to make things easier, but hope the prayers and positive energy I'm sending your way helps a bit. Hang in there!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

I second what MAbound said!

Also, the things you had planned.... They will still be there and available when you are up to them. I was in the middle of remodeling my home when we found out about cancer. I was able to still do some things but many had to wait. I'm almost a year out from my final treatment (Brachy) after chemo finishing in Dec. '15. My home is almost done now. It waited for me. :-)  And, honestly I think I have enjoyed doing the work more since I have a much better appreciation for being healthy and strong.

Take care of yourselves. Be kind and patient and give yourself permission to rest. Come back and vent, scream, cry and celebrate as you get through this next phase of treatment. We are all here for you!

Love and Hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Bluesmama, there is no doubt that the public side of losing your hair can be emotional but maybe thinking of it as proof-positive that the chemo is doing its job can help you embrace it a little? I never quite got used to seeing myself without hair. The first time was rather traumatic for me but by the second time, I was always just a little surprised. Have you considered going to one of the "Look Good, Feel Good" classes that are held at some of cancer centers? I hear that they really do help. You CAN do this!

janaes
Posts: 786
Joined: May 2016

This is what I think. The loosing your hair is an emotional thing.  Its okay to have your emotions about it.  I definetly felt them while loosing my hair.  It did get easier with time.  It took a long time for me to even look in the mirror.  I was planning a trip to ID when my hair first started comming out.  I couldnt decide what to do because i was about to see a bunch of my extended family that i only see once a year or more.  Some didnt even know I had cancer.  I wasnt ready to let go of my hair even though i knew it was comming out. It really was a daily thing for me.  I just excepted where I was at that day and hoped that i would know what to do by the time my trip was.  It did work out.  I ended up weaing my new wig to my trip.  Even now my hair is about 1/4 inch long and am getting tired of my wig and go with out it a little more but Im not there all the way.

Here is a song that might help.

https://www.youtube.com/watch?v=sNaW6FyiJRI&feature=player_embedded#

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

On with the hair discussion. My hair is growing back now with being finished with chemo in June. At first it came in much graver or should  I say silver. Finally I went without my wig because I was tired of it. I received many complements on it and my response was I don't hate it as much as I thought I would. Well recently I had it colored and my hair stylist trimmed it just a little. Now I'm having a pity party. I want my hair back the way it used to be, shoulder length. This will take a long time and be a painful process. I feel very vain about all this, but I just don't like the way I look. So yes I understand how you all feel about losing your hair again. I'm right there with you!

janaes
Posts: 786
Joined: May 2016

Soup, my hair is silver too.  Im thinking of coloring brown like mine used to be.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I think we all dread hair loss, because it does make it so very obvious that cancer has entered our lives.    I have now lost my hair and grew it back 4 times in all.  The first time was not as hard as I thought it would be ..  I was still teaching and was just plain busy.  I was worried about how my students would react.  We talked about it and I let them decide on my 1st hat. I bought a few cute animal hats and they chose a black cat.  I had a harder time the 3rd time around and that time I cried and cried when my husband shaved it off.  The last time it just seemed like part of my life.  This is my first winter in 4 years that I haven't needed a head cover, and as odd as it may seem I kind of miss shopping for new hats.

Bluesmama and Tami,  you are both strong ladies and you will make it through this too.  Sending you hugs and prayers, Lou Ann

 

MAbound
Posts: 907
Joined: Jun 2016

Lou Ann...you are always so generous sharing your experiences, wisdom and support on this board. You've been through so much! You truly are a heroine to so many with the courage and strength you have shown on your journey. You have no idea how inspiring you are to each of us who follow you onto this site. Thank you!

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

Honestly, wigs today are really good.  I did not wear wigs during chemo because I didn't care who knew and found making a "fashion statement" with beautiful headcovers and big earrings made me feel good and was rather uplifting (sometimes trying to fix your hair isn't!).  I actually liked wearing them and I still do sometimes.   Unfortunately, my hair didn't come back (side effect of Taxotere) and so there I was, well physically again,  but with sick looking freak show hair (SOME of it came back, just not enough to cover my head).  I went to a wig shop and tried on wigs and was pleasantly surprised.  I think you will be, too.  If you don't want anyone to know about your chemo, I think it is very doable with a wig and some other props.  I also found that false eyelashes DO work when/if yours fall off.  Permanent makeup is a must for me, I have liner and brows (brows need to be redone).  I now have enough eyelashes to get by.   And wigs do not need to be expensive.  They do NOT need to be human hair and they do not need to be hot, especially if you don't have hair underneath to provide that extra layer of insulation.   I wear synthetic wigs and over the years have found the ones that look the most natural.  I have made more than a few mistakes, but for me this is a lifetime commitment, and while I'm not ok with it, I am ok with how I look with all my props in place.  Strangers stop to ask me where I get my hair done.  The wigs can look good and that's what we want, right?   I'm so sorry you're facing chemo again and the hairloss is a big deal, but there is a reason all the wig shops and brands are in business - and it's not all just about covering up a bald head because of chemotherapy.  That is only one reason.  Some women love wearing wigs and I have learned over the years that many black women do simply because their own hair is so difficult to manage.  I don't happen to be one of the women who would ever consider wearing a wig, but it really isn't so bad.  Honest.  PM me if you want/need any wig advice.  I think I've tried them all . . . and continue to learn.

Suzanne

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2648
Joined: Mar 2013

Suzanne, you are correct on wigs today. I remember being at a training event talking to a colleague who knew what I was going through and a complete stranger walked up and said how much they loved my hair. Ha!  I just said thank you.

Another time I was getting off an aircraft and a woman told me she loved my hair and I told her it was a wig. :)  

To Soup, I understand how you feel. It just takes time. My hairstylist and I laugh about it now and I tell her how I drove home crying with my hood up on my jacket I hated it so much. I am over 4 years from ending treatment and it is finally going back to what it was,  but there are times I miss my curls.

I second what MAbound said about Lou Ann.  

Nellasing
Posts: 529
Joined: Oct 2016

I second all these comments and would just add you both have already been through so much and you are doing GREAT!!!  I imagine at the beginning of all of this you couldn't imagine getting to where you are now.  That is my advice- get through this the same way, one day at a time.  I don't let myself get too far ahead in my thinking.  Each day has enough to do and be concerned with.  Stay in this day, do the next thing and each tiny step forward, no matter how small, will bring you to the finish line.  Try not to be concerned about what others know or think because you can't control that- what you can control is how you think and feel and act.  You are awesome and you are stronger than you think and you will do it your way and it will be great!  Here for you!!!  (((HUGS)))

bluesmama
Posts: 124
Joined: Aug 2014

Tami. I'm rooting for you. Having cancer the second time around has been so entirely different from the first bout. While I didn't have chemo/radiation the first time, I can relate to you all now. Everything seems to feel like it needs to count. Everything and it's incredibly stressful. Enough so that I've reached out to a therapist.

Anyway, I scheduled an appointment with a barber. I've always been vain about my hair but in the last couple of years I've kept it short. The problem is the short haired wigs are longer than what I normally have which I admit is leaning towards youthful punk. I guess that part of me will never grow old. I've even made a hair transition plan mostly to help myself get used to a bald head and I will ask for a military haircut. Imagine a marine. We'll see how that goes tomorrow. And since my hair generally grows like a weed, I'm hoping I'll be able to reproduce that hairstyle and eventually let the top of my head grow out longer so I can go back to my usual hairstyle. I know vain when you think this is more about doing everything towards a cure but it is what it is in my insecure head.

I was going to just wear a baseball cap and beanies but now I'm thinking I need to get a wig while I wait for my long term disability to get rejected. I heard about the Look Good Feel Good meetings so I'll look into that. What I was actually thinking of doing is get any short hairstyle closely matching my black hair and wear a baseball cap over it. That way I don't feel self conscious about the style and yet I don't look like a cancer patient at first glance which is all I'm about to allow stranger see if I can help it!

So apparently, there's a pre-existing condition clause because I didn't make it a full year at my new job and they have a look back period and they're definitely looking into that possibility. So now I have to look for a wig in case I need to go back to work during treatment. Not too happy about either. Not my job's fault. The company hired to handle these things are obviously interested in protecting themselves and I have a very supportive boss who will do what he can to advocate for LTD through the right channels. 

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

If you don't want to go for a full-on wig (I didn't want to be bothered), there are some good fake bangs out there. It's like a headband with bangs attached that you can wear under a hat or scarf. I got mine from Godiva's Secret Wigs but other places online have them as well. My hair is on it's way out - despite having cut it quite short a couple of weeks ago - and having the pre-made bangs ready to go is emotionally comforting to me. Will let you know how well they work out...  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

I used the fake bangs all the time during chemo.  No way was I able to wear a wig due to hotflashes. But bangs under a scarf worked well. They also make the bangs with a bit on the sides too that I liked....

Just remember.... this will pass and it really goes by pretty quickly.

Love and Hugs,

Cindi

ps - they also make a baseball cap with attached hair. I liked this for casual outings as well.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I bought a nice looking wig at the very beginning of this rollercoaster ride, but only wore it several times.  I just couldn't get used to it.  Adults all told me it looked so nice, but my 1st -and 2nd students were much more honest with me.  They told me point blank that it was not me and that they liked my animal hats much better.  I had to agree with them.  Again we are all so different and have to do what we are comfortable with.  I always admired the ladies that could go without a head cover.  I though they looked elegant and brave.  I never was able to let myself go that free.

Hugs and prayers, Lou Ann

lyn347
Posts: 4
Joined: Dec 2016

I think I can cope with the hair loss but I don't know about the rest of it. I find out in another week when I'm to start the chemo. I learned the cancer was stage 1A Grade 3 and after the CT scan I had with contrast I dread the needles. The one they did for my scan hurt so bad I had to cry out. I try not to think about it . I marvel at those of you who are facing chemo a second time. I pray for all of us to stay strong and beat this stinking disease

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

You will find that you will be stronger than you ever though that you could be. Come here to learn a nd vent when you need to.  We are here to support each other through this.  My advice:  Get a port.  It will make chemo,infusions and blood draws so much easier.  I have had one four four years now and I don't even know it is there unless I accidentally bump it and I don't wear anything so low that it shows.

Hugs and prayers, Lou Ann

bluesmama
Posts: 124
Joined: Aug 2014

So I got that military GI Jane cut at a nice barber. It was hard to keep back the tears. I was a nervous wreck. I even told the poor girl cutting my hair that it was going to fall out in a few weeks so have fun with it. Every day I seem to find something to have anxiety over. And I've even pushed away one of my dearest friends recently and now she won't respond. I've been misbehaving left and right. The carbo-taxol to me is being confronted with the idea that there's a chance that it spread. And then I get all weepy and sad about missing people already if I'm gone. Especially my nieces, family and few dear besties. One thing I've found myself doing over the past couple of days is making an effort to communicate what I need from people and not being afraid of being vulnerable. 

As for the needles, my arms have been pricked so many times I've lost count. The chemo infusion nurses have been great. It's the bloodwork nurses that could use some help at my location. One in particular is such a nervous pricker that she calls someone else to do it after she fails a few times. I try to grin and bear it but it annoys me to no end when I see her pick my name. 

I've tried to ask for a port but it's not worth the risk according to my doctor since I'm only getting 4 infusions. I have very few accessible veins so they've used the same one for the last two. My vein gets tired towards the end so make sure you ask for heat packs!

Question - have any of you stuck your hands and feet in ice during the Taxol part? Are you happy with the results? I'm going to try to do it. 

Kamushka
Posts: 22
Joined: Feb 2017

I had excruciating and debilitating pain with chemo numbers 1,2,and 3 .....was told it was just my body's reaction to chemo and to increase duration of steroids. But only hydrocodone gave me relief to sleep somewhat.  I received taxol and carboplatin together once every three weeks and my sessions last seven to eight hours. After chemotherapy #4 and the neuropathy becoming so prominent in the hands and feet (and that is not always reversible) they reduced the taxol to 80% and I put my toes on ice packs and held ice packs on my fingertips during the three-hour  taxol drip.....seemed to help.  I also had a port before chemo started however I have had much trouble with it.....they can't always get it to work without a myriad of heparin and me contorting into positions my body hasn't seen since high school! Porter,....the name I've given him should have probably been called Waldo since we are always looking for him. The surgeon evidently implanted him too deep in my chest and too close to the center but they usually find him somewhere under the collarbone. By the time they finish messing with Porter and resterilizing and freezing him....the next several days cause my chest and arm to hurt. Because I keloid the scar tissue makes it harder to locate. I have had sonograms and a port study with dye contrast and xrays to make sure Porter hasn't flipped over ...luckily for me that hasn't happened. I have my last chemo in February and as soon as I start radiation in March the oncologist said it can come out. If, God forbid, I ever need another one...I will have a longer discussion with whoever inserts it .....and I thought I had done my due diligence before but this time I have experience.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I also have a port that is hard to access.  It is a replacement port because I stupidly had the first removed when I was finished with frontline and everyone said it was ok to,do.  Well  now this one is tipped because of scar tissue from the old one.  I have had it for3 years now and it works fine although quite a few people have trouble accessing it.  Only Three people can get in easily and they are all phlebotomists.  My port is well known in the.infusion,room and only, a few nurses still try to do it.themself. The rest just call Justin. It is so painful when they stick you over and over trying to get the needle in the right spot.  In other words "I,feel your pain"

Hugs and prayers Lou Ann

Nellasing
Posts: 529
Joined: Oct 2016

SO glad you only have one more to go!!!  So sorry you are suffering like that- we are all so different and you just never know.  I hope and pray your last one goes smoothly.  (((HUGS)))

PS I love that you named it Porter ;)  and ha, ha on Waldo- you have a great sense of humor and I'm sure that's why you are doing so well <3 <3

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

One of my friends used the ice and I don't believe she has had any neuropathy. I hadn't heard about doing that until I was already finished, so yes I have neuropathy. It might be worth a try.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i was given ice booties to wear could have had the mittens but I didn't need them. I didn't know about them until after frontline treatment was over and I already had neuropathy in my feet,  it never got any worse so I do think it helped.  My cancer center has them and the change them out when they warm up

Hugs and prayers, Lou Ann

MAbound
Posts: 907
Joined: Jun 2016

I wore the hypothermia slippers and mittens starting with my second infusion when I was also switched from Taxol to Taxotere because of the neuropathy that caused. It didn't cure what I had, but it didn't get worse and using them for pain relief helped a lot in between. I don't know if how tolerable or effective just putting your feet and hands in ice would be, though. I got the mittens and slippers on Amazon. Not cheap, but the slippers were definitely worth it.

Red Corvette
Posts: 107
Joined: Jan 2016

Mrs. Red did ice hands and feet throughout chemo and had no nueropathy. She also used cold caps and never went bald. Theres a lot of info on icing in other threads that you may want to check as well as online that you check. It's not the most pleasant thing but we thought it worked great for us.

Red

 

 

 

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