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Finished chemo & am feeling low

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hello everyone, just thought I'd up date you all. I have just finished my chemo and find myself struggling. My last treatment was 3 weeks ago. I was a little disappointed with my CA 125 as it only went down from 70 to 65. I have been in control all the way through my treatment, mainly because it was like a "journey" I had to travel along. My hair fell out and I accepted this as I knew it would happen. I put on weight which I hated but accepted it because of the steriods. I have been unable to carry on with my favourite hobby RUNNING but I accepted it because I had put on weight & was tired because of the chemo.

Now it is all finished and I have this kind of dread. It is hard to explain. I desparately want my 'old' life back but I don't think it will ever happen. Going back to work will be very difficult as I am a college lecturer and you have to be 'mentally' alert. I have terrible 'chemo brain' and can't sustain long conversations that involve any type of recall. I have no idea what day it is!! My short term memory is foggy. Physically I am still exhausted. I thought that once I stopped chemo I would soon get my old self back but I am still so exhaused all the time.

I think the rest of my life will be a constant battle.

PS My son left home yesterday. He hasn't moved very far but I feel so sad and lonely as my life will never be the same again.

Tina xxxxxx

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

dearest tina,

So sorry to hear of your depression, and if company likes misery, most people hit this place once they are finished with chemo. Remember your body and spirit has been in a fight mode and now its like "what next". Please talk to your medical team about how you are feeling, they should treat the whole being not just the cancer. Many men/women go on a anti depressant for awhile to help them through. Then of course no hormones doesn't help, on top of other changes inlife. Please know if you love to run, run..give yourself short goals and you well be surprised how fast you are back to running and living life to the fullest. Sending lots of Hugs ♥ Prayers Bonnie

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Tina,

I can only say that I understand. I long for my old life back too. I cry...not as often...but I still do.

My job officially 'let me go' in March of this year, 1 1/2 years after being diagnosed. After turning in the necessary paperwork I sat in my car and cried. That part of my life is over...gone. (I chose not to return to work after being diagnosed and they originally kept me as per diem.) I just want to be normal again!! I get jealous of other young women going about their lives...laughing, planning, living. I feel I have this weight hanging over me. I was always pretty confident about my appearance. I took pride in looking great. Now my self esteem is low. I too am carrying around 10lbs extra. I see lines on my face that weren't there before this all started. I long to be young and carefree again!!

I started seeing a PhD about 2 months after completing chemo. I try, soemtimes really hard, to appreciate the fact that I am feeling well and I have been having a great quality of life. I realize I can start having health problems so I try to appreciate that I am feeling good. My two young boys, ages 6 and 4, keep me busy. I am happy to be a stay at home mom.

I hope you can make peace with the changes in your life. Our lives are forever changed. Life is too short to hang onto things we have no control over. Enjoy your end of treatment...hopefully it will be a lengthy one.

Nancy

Kathy T
Posts: 25
Joined: Feb 2010

I can relate to what you have said--I finished my chemo in Dec 09 and thought that everything would go back to normal--not true. I think after chemo we have to find a new normal. I spend days thinking about last year when my life was normal. Everyone tells me it will get easier--that I hope is true. I guess now somedays are easier then other. I am hoping that with the warmer comes a new found happiness. I will keep you in my thoughts and prayers.

Kathy

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Chemo kept you in 'battle mode', actively fighting the beast, in CONTROL to some degree. And when treatment is over, you lose that action-oriented 'control', and now it seems like all there is to do is wait for something bad to happen again. At least that's how I felt at first. I was able to shake that haunted feeling pretty quickly, but if you don't climb out of it pretty soon, please don't hesitate to get some help. Facing your own mortality is HUGE, and I know I didn't really face that reality deep in my soul until AFTER I got out of my initial treatment protocol.

Remission should be a time of great joy. I hope you find peace within this new place you are in. We all mourn the loss of our flat unscarred stomachs, our former flowing manes of hair, and we miss being so naive as to be believe that we are bullet-proof and immortal. Now we know we aren't. We're all wiser than we were, but who wants to be wise? Let me be a happy fool again!

You're still shell-shocked. Walk out into the springtime and deeply smell the lilacs and cherry blossums and feel the warm sun on your bald head. Life is beautiful! And you're still here! You're STILL HERE! I hope you can feel the joy of that, and let that simple joy be enough. Still here. I think that every day. Still here. Always makes me smile.

NCEllen's picture
NCEllen
Posts: 117
Joined: Nov 2009

Tina - you are still healing in body and spirit. We all have a new perspective on where we are today because of this disease. My job let me go last Aug. and I suppose that was really a dissapointment to me more than I thought because I had so much support from my co-workers going through the whole ordeal and now I rarely hear from any of them if ever. I attended a cancer support group (just 3 women) yesterday and cried because I was feeling blue about my husbands diagnosis, but realized it was OK because those are people who understand just like us on this survivor support board. It would be nice if we all could reach out and really ((hug)) each other! I have to want to try to stay strong for my family and if I can, I put out the positive thoughts to help them deal with my (our) life. That is a job in itself and can take alot out of you mentally, but then I see myself failling to listen to my own pep talk. What gives with that? My only answer is that my faith speaks through me to them and gets me through it and it always surprises me afterwords.

WE are allowed to feel down and up. Your chemo drugs are most likely still working in your system and your body is still healing. Your creative and happy spirit that you were born with is still there, it's just the little seams in the spirit that we don't see that make us feel like falling (like stubbing your toe) - but we get up and keep going and your spirit is still intact- for real. I know you've heard of fight-or-flight response, we don't run, we all fight...hard! And we get tired, and it's OK to rest. I'm planting flowers this year- I'm not a gardner but I've got my TEAL garden with a teal gazing ball. And I when I look at that teal color, I see God's work in my life and still wonder what the grand plan is for me. I stop and just offer up a prayer for others who need it, even more than me. I pray for strength, peace and healing for all on this board. I hope the sunshine comes out for you today. Ellen

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

Your post is just beautiful. Saundra

froggy1
Posts: 208
Joined: Nov 2008

Hi Tina,
First of all, I have to thank you for your post. I think the ladies on this board create the only place where we can go to hear "it" like it really is. The physical part of this disease is one thing, but the psychological is another. My family seems to have to attitude that if I'm still alive, nothing else matters. I have tried to wear make-up and a nice wig most of the time and they all say I look great-Ha. You should be taking a journey through my insides! LOL
I think the hardest thing is to re-adjust our goals. I don't think we will ever be our old selves, although there are some that seem to be! We are always waiting for the next shoe to drop with this ugly disease. I used to make my "to-do" list each day. For a long time, I was lucky to get the first thing done! Last week, I cleaned out my garage. My husband was furious, but I needed to feel normal! LOL
My disase hit right in the middle of a mid-life crisis. My two boys graduated from college and moved out of the area and got married. I hardly hear from them at all. I have been doing eldercare for my parents for almost ten years. My Mom is in a nursing home, going on 6 years, and I am her guardian and POA. I would just love to be "free" to deal with my cancer and me for now, but it was not meant to be.
Tina, I do think it takes some time to recover from the initial chemo. You have to give it some time. I didn't have much of the memory thing, that must be frustrating.
And yes, this is a constant battle, although you may be one of the lucky ones that walzes into the doc's office in their size 4 designer jeans, as if this is no big deal.
Weight loss was not one of my side effects. I have my black elastic waist pants.
I am in awe of the ladies on this board(Bonnie and Sandra right now) and their ability to keep fighting. They provide such inspitation(thanks)
'Hope your days get better, little by little. Pick one thing each day that makes you happy and try to do it!
Luv, Ginny(aka) Froggy

MK_4Dani
Posts: 318
Joined: Sep 2009

I thought after chemo I would be back to my normal self in a week or two. I asked the nurses how long it would take and they said 3-6 months...I wanted to prove them wrong. Well, as usual, the nurses are always correct. I was in great shape before dx. After 9 months of fightig the cancer I am over weight and out of shape. I am 10 weeks since last chemo and I am now feeling 85 percent. I have 10 lbs to lose and I am working back to the same activity level. Last week I was physically active (horse show) all day Friday and Sat I was exhausted! Give yourself time Tina...you are going to get back to running and lecturing. I take Lexapro to help with the anxiety and depression and it helps. I am not advocating just letting you know it helped me. I think: before dx I was in shape and carefree proving my physical acumen. The cancer has made me prove something more: the willingness to fight deep down to my soul and exercise my faith, hope and even humbleness. OK now I have proved my mental/faith acumen. Now I am working on bringing it all together to make me a teal warrior of the highest order. Corney, perhaps but I am a better person today no doubt.
Hugs and Sunshine,
Mary

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

Hi Tina,
I can also relate to that lowdown feeling once you complete chemo. I'm in the middle of chemo now for a recurance, but I felt as I imagine you do now after I completed my first round of chemo. I remember that I expected to feel my strength return quickly and I wanted to go back to my "real life" before it was so rudely interrupted. It took maybe 3 - 6 months to feel strong again. BUT... then I was able to go three years before this recent bump in the road. I think that while you're going through diagnosis/infusions/blood tests/
exhaustion etc., it is so overwhelming that it is not until over that you get a chance to start to come to terms with all you've been through.
(((HUGS))) Maria

Susan523's picture
Susan523
Posts: 235
Joined: Oct 2007

daily.

Daily I get that 'dread' feeling...

I have just completed my 4th round of chemo the 10th of Feb this year. But I remember after the 1st chemo; asking my nurse "why do I feel all of this anxiety when chemo is over?"
she replied: "Because you aren't actively fighting the disease".

I think she was right. There is something about that full appointment calendar, and although it's "poison", when I go to that Infusion room, I KNOW that they are doing everything possible to help me. It lasts for months on end... chemo, be sick, see the doctor, get labs, go to the pharmacy. And then it stops.
This became a very insecure feeling for me; but I remembered what my nurse said, in a nutshell. "You aren't actively fighting the disease".
I think this plays on us psychologically.

How do we leave it all behind; when we have a constant reminder by looking into the mirror?
Or by all of the pill bottles on the table? (SICK of looking at pill bottles!!) Or when a friend asks us to plan something next December. I have to say "I don't know if I'll still be in remission" (?)

I guess I don't have any words for you that will make you feel better; I can only tell you that I understand completely, as do all of the women who have replied. I have had this thing come back on me 3 times after my initial diagnosis, so I can only be grateful for each and every day, even if I don't feel like doing anything or going anywhere; or don't want visitors yet~

I'm building my stupid little farm in Farmville~ but my house is a mess. I simply don't have the energy, and I've given up worrying about it for now. The day will come that I will feel good enough to do some deep-down cleaning; so for now, I can escape to my computer and visit my friends all over the World!! I have friends in the US, UK, France,Germany, Brazil,Belgium... everywhere!!

But you know what? I planted some REAL seeds the other day! Sweet Peas & Portulaca. I started them in peat-moss cups (you plant the entire thing), as I live in a cold climate where it's still too early to work in the yard. So they are in the window, and I watch them daily, waiting for them to sprout.

Today the sun is out, so I sat in the sunshine with my bald head and pet my sweet dog for a while.

I think that this disease forces us to find new things that are rewarding; even if we are stuck at home with a low white-cell count, or no energy or appetite whatsoever.

Try to find those things that will make you smile again; even at home. I also did a paint-by-number set; as I can't draw! But I sure enjoyed painting that thing! My husband wants to frame it and hang it in the garage!! LOL

Yes, I sure miss my swim aerobics and my friends there. "Friends"? haven't heard from any of them in over a year. Funny how people we thought were our 'friends' often run the other way when they don't know what to do or say. So I have discovered friendship elsewhere. Yes, it hurts my feelings, but I have new friends now; that will listen to all the gripes & complaints & small pleasures that I have to share.

I'm not saying to stop running; but just try to find something in the meantime to keep you occupied.

And yes, when needed, I have Xanax for the anxiety. I have no problem admitting that I need that help now and then; when I really start thinking and it takes over my mind until I
work myself into a panic~

gosh, I get into a panic thinking about boarding a cruise ship next month! Am I ready for it? Can I leave my dog? lol silly!! But that's what my mind does to me.

I'm sorry; I'm rambling now...

Please just know that you are in SO MANY PRAYERS here! And if I have discovered nothing else through this journey, it is the power of Prayer.

God is there 24hours a day to listen to us. And the ladies are also here, 24/7! We are blessed to have the support & love that we have.

Have Faith, Tina... God will get us through this life, just as He has given us life.

Love,
~Susan xoxo

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have read everyone's comments and you don't know how much they mean to me. Every single one of you has given me such inspiration, faith and hope. I feel so blessed to have such wonderful ladies giving me time (to read and answer my post) and support. I am going to keep on reading your comments as they have given me so much hope.

It is really comforting to know that I am not on my own dealing with the fall out of this cancer "that has taken me unaware when I wasn't expecting it". Your comments about how you feel about your appearance and self esteem totally matches my own that I had tears in my eyes as I was reading it.

I am blessed with some really good friends at home, but they have not been through this journey so they don't really understand. I am now blessed with friends on here (I consider you all friends eventhough I have not met you in the flesh)where I know I can 'bare my soul' and you'll all understand and not judge me.

We are all facing the unthinkable and are finding a way to cope with it. What has happened to me is making me question almost everything else in my life - including my marriage. My marriage was on shaky ground before I became ill, but now it has been tested by my illness I don't think it will last the course.

You all are so amazing and I thank you from the bottom of my heart for your care and kindness. Much much love Tina xxxxx

TraumaMamma's picture
TraumaMamma
Posts: 19
Joined: Apr 2010

You came into my thread and I am pretty sure I will be back next week to join your clan.

I wanted to read what to expect down the road. I know it isn't easy.

But even knowing what I am facing, the sunsets are a little more brilliant, the flowers smell a little stronger and I appreciate being able to slide my legs over the bed and start a new day. Even if it isn't the day *I* had envisioned or planned.

One of my favorite quotes is this:

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.' --Mary Anne Radmache

Be kind to yourself. You are brave.

You are all my heroines.

xoxxo Donna

kayandok
Posts: 1223
Joined: Jun 2008

You have received some great wisdom from all the ladies, I am just popping in to add my words of support. Be gentle on yourself as you find the new "normal", whatever that will be.
Hugs,
Kathleen

msfanciful
Posts: 580
Joined: Nov 2009

Hello Tina,

I hate to see you're going this but understand you recently completed your chemo so as far as being a bit "foggy" this is definitely going to be the case for a bit; but it will improve, it really does. Don't forget your body has been amazing just to survive any of the effects of chemo so it is going to to take time for your body and spirit to rebound from the attack it's undergone.

Initially after my chemo and then the realization (after 3 recurrences) that "wait a minute, my life is never going to be the same again." OMG, I cried, cried to the point of heaving, so with the tears and the help of my 10mg. lexapro, I said to myself..."Okay Sharon, your life was never the same after you graduated, after leaving home, after getting married, after having the baby, after the divorce, after knee surgery, after leaving your safe job to start your own business, and of course...after cancer."

I guess my point is life is everychanging anyway isn't it? Every phase we move into the previous life is no longer exactly the same, so for me to maintain my sanity, that's how I looked at my life after the cancer, just another lifechange. I think it's isn't so much that I want my old life back as it is, I wished I had've appreciated it more...but we live and learn Tina.

Why just look at me now, I'm up @2:04a.m due to insomnia (steroids) writing to my favorite person. Lol!

You have every right to feel the way you do. I think you have to feel these emotions, but most importantly feel them but then,move on from them...you will get stronger.

Don't forget, just a few weeks ago, I was down once I realized my etopocide didn't work and was to begin the once-a-week taxol maintenance for three weeks and now my numbers have gone from 62 to 36 in just 3-weeks. So I guess this is just how it's going to be up and down we just can't let this roller-coaster ride get the best of our spirit.

I know you can do it Tina!

Love,

Sharon

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I can't help but feel cared for whenever I log on and read your messages of support - they have given me such strength. It is true I have saved all of your messages and I will copy and paste them into "my journal" that I write in.

I am feeling so much better today and have begun to realise what you say Sharon about how out life changes all of the time is so true. It is true for everyone, not just for someone who has been through cancer. I had a very traumatic year prior to being diagnosed and maybe it is the right time for me to take stock of my life and make some important changes (not yet but in time)

We shouldn't be scared or afraid of change, but embrace it. I am on citalapram (anti-depressants) because of what happened almost 2 years ago so I guess I will stay on them a while. I just get scared from time to time but it passes as I learn to deal with the feelings.

Thank-you once more for all the strength you give me with your words of advice and wisdom - it means so much to me.

Much love Tina xxx

groundeffect
Posts: 651
Joined: Mar 2003

Hi Tina,

Reading through all of this, I can see you've gotten a lot of support and suggestions! I was pretty low when I got through my first chemo, too, but I think I learned a lot with it. I did start taking a mild antidpressant then, and still take it.

I was looking for a job when I was diagnosed in 2002, interviewing and feeling odd after I lost my hair and wearing a wig. The job I was able to get provided great amusement for my support group, as I worked (remotely) with an extremely petty woman who relished in trying to humiliate the people she worked with, and was unfortunately allowed to practice her special brand of control over almost everyone. I wasn't buying into that after all I had been through, and started practicing my own sort of control by denying hers! I felt better, I'm sure my co-workers felt better (I drew some of the heat from them sitting in an office 100 miles away), and I got some great ridiculous action stories to share with my group!

My job ended a couple of years ago when my office was closed, and I find my driving force now is finding challenging things to do. I finished chemo (again) in Feb., and started the cardiac rehab class I was recommended to go to in early March. That class, which has monitored exercise, is giving me energy and strength. I haven't worked a full-time position since that office was closed, but I worked for the 2010 Census about a year ago. That was something new, and required meeting people and driving around independently. I'm going to work for the Census again this year, too, after questioning myself about whether I have the courage to knock on doors and ask people about those living in their home. I've decided I'm tough enough to do it. I also started up my eBay business earlier this year, which I really did a lot with during my first chemo; keeping copious notes was mandatory because I couldn't depend on my memory. This time I seemed to be in better control.

I'm sure once you get back to work and start to associate with people who have challenged your brain before you'll be fine. Chemo brain is a temporary thing, thank God, and I'm sure you'll be out of it in short time, and will regain your physical strength right along with it!

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

Hello
I know how you feel
it has been almost 8 weeks since my last chemo and 5 weeks behind on last 2.
Makes you wonder how some of these women do so well, and some of us have to struggle so to get by with daily life.
I will say a prayer for you
It will get better

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