Progression blues....from the heart

Ceesun · 03-25-2009, 07:16 AM

Friends, How do I get beyond the feelings of stress and worry at the thought my treatment may not be working. Everytime something comes up ( slight progression) I start thinking that my life is starting to end and my time may be up. I feel so bad for my grown daughters, and I realize they are young adults now, but feel that they still need me to guide them. I guess as parents we always do. I know there are a lot of chemos out there, but can't help feeling a little doomed at being stage IV. Thanks for "listening" Sincerely Ceesun

Believe51 · 03-25-2009, 08:52 AM

Oh Ceesun, I wish there was something I could say to take these feelings away from you. What you are feeling are emotions that are all normal. My cancer was not breast nor stage IV and I am sorry to always use Ed as my example. I will though because he lives this and even caregivers have these feelings......

When I think of a cancer cell I envision cell division only at a high speed. I feel these nasty buggers are growing and dividing at an alarming rate on a fast forward setting. Right now Ed and I feel a bit overwhelmed but not quite defeated. Yes, there are many things out there still to try and even the most planned and educated decisions can sometimes not come together. Yesterday we went to see OncoMan and we were planning on another chemo regime to be finalized, but not yet. We will take another petscan and then decide since his tumor markers are elevated but not multiplying at the rate we thought. Should be happy but both of us were not. We feel unprotected right now but even with new chemo, it still might not work.

The best things we can do as a patient or caregiver is to do just as you are doing. You need to have faith in the doctors/facilities involved in your treatment, sometimes calling their decisions. We also try to eat right, stay fit, etc, etc to get well. No one really knows what will work for us even if proven effective for many others. With each reoccurence Ed and I face we feel some doom, some defeat, but it is quickly replaced with hope. Your hope will arrive soon Ceesun, I am sure of this.

I have no more room in this mind to let this doom settle there, but still it comes in the night no matter what. We make our final decisions based on what we have in front of us at the time, Ceesun. The 'What If's' were killing my soul a little each time. I promised not to ever say, "We should of done"....we are doing it, whatever that may be based on "What is". Just like you Lovey. It has taken me a very long time to deal with feelings like this. They surely always come and even the most disciplined mindset has challenges keeping them at bay.

Ceesun, I am going to visualize that the cells that are causing such grief in your days are writhering away. They are not getting the hormones they need to survive. I picture them screaming in pain as this new regime takes its toll on them. With time we will have visual proof that they hate the new regime. These cells know that you are not old friends. They already know you are doing whatever you have to do to abolish them.

Remember what kind of Warrior you are. Think of the faith you have in your 'whole picture' treatment. Reflect about all the knowledge you have that aids in conquering this disease. Your life is not ending Ceesun, not right now Sweetness. This is a bump in the road that you will climb over soon.

Although discouraging, if this chemo does not do what it needs to, another one will. We need to find your magic potion is all. I love you so much and I hurt hearing how sad you are. Try to breathe as heavy as your chest may feel. Do not lose heart Darling, not now after all the hard work you are doing. You are going to find that magic potion and I will be right here to celebrate with you.

You are one big toughie and I am so glad that I am not one of those cells!!>>All My Love>>Believe51

chrisy · 03-25-2009, 09:47 AM

Well, that's a great question...if you find the answer please share it.

Being stage IV is depressing - I experience the "feeling doomed" mostly as a profound sadness. And you're right, every time something comes up it is a battle.

For me, the "something" can be slight progression, no progression, treatment WORKING (but for how long?), learning of even a relative stranger's death to this disease, learning of someone miraculously surviving it. Good news, bad news, no news...I worry about who will finance my sister and niece; who will love my husband if I'm not there. I am, after all, his "human credential" - if someone as great as me loves him, he must be a worthy person.

The truth is of course that everyone's days are numbered, but most people can avoid contemplating it. It's harder for us.

What helps me most is when I am able to surrender the fears to a higher power; to understand that I do not see all the pieces of the puzzle and to believe that we are all in good, loving hands. That comforts and calms me - but I do not live in that state of grace all, or even most of the time. I'd be much better off if I did.

It's not that I don't trust or believe, I just keep taking the burden back.

So I fight at ground level instead with an array of weapons including healthy denial, hope, focus on today. My favorite is "well, what if I live for 20 years, I'll feel really stupid if I wasted all that time worrying about dying".

I take heart that some at stage IV are apparently cured, or are truly able to manage the disease as a chronic condition. Why not me? Why not you?

Science is running very very fast...maybe we will be the turning point. I had progression after 2 years on herceptin alone and went into a trial that kept me stable for 8 months then failed...just as my doctor was opening a DM1 trial. Coincidence?

As I look at what I just wrote, I'm thinking - hey, that's just a bunch of mind games. True, but so are the worrisome "what if's". If we could all just channel that energy into healing thoughts instead. WAY easier said than done.

Wow, I'm really rambling...and now I've got myself worked up and need to resort to my biggest secret weapon

Breathe in, Breathe out
Breathe in, Breathe out
Breathe in, Breathe out

Over and over...all day long.

Ceese, my heart is with you. You've every right to sing the blues, and every right to walk in the sun as well.

Makes us all tightrope walkers.

Much much love
Chris

Jackie07 · 03-25-2009, 11:00 AM

Ceesun,

It is indeed difficult. I have no children, but I can still understand your feeling. It reminded me of a short story entitled 'Love' by Leo Toltoy.

There was an angel who had defied God's order to take a woman's life while she's giving birth. The death angel came back to heaven 'empty-handed' and explained to God that he just couldn't do it. "Who's going to take care of her baby?" the angel questioned God. The Almighty then told the Angel to go down to Earth to find answers of three questions:

What does man live 'on'?
What is not revealed to man?

The fallen angel lived on earth as an assistant to a shoemaker for many years before he figured out everything and went back to Heaven.

His answers to the questions are: (1) man lives by 'love' - the orphan girl was well taken care of by a neighbor who had a newborn boy at the same time; (2) The 'fate' such as time of death is not revealed to man; (3) I forgot... Something like 'just do our best and let God take of the rest'

I've been contacting my old friends and have had a 'good' time reminiscing the past. It's like an on-line 'bucket list' tour. As I am laying in bed typing this message because of abdomninal/pelvic pain with 'unknown' cause, I can say 'I feel your pain'. But my Mother always tells us that 'you won't understand how I am worried about you until you get your own children.'

hutchibk · 03-25-2009, 11:03 AM

Thanks for posting Ceesun, and thanks for answering Marie and Chrisy.

Chrisy - you have definitely crystallized what it feels like for me being a stage IVer. I think you and I approach it and wrestle with it in very much the same way.

I have tooled along pretty well until last November when it caught up with me due to an otherwise innocuous bout with a sinus/middle ear infection complicated by brain rads fatigue. It knocked me so far down physically that it made me endlessly blue and fatalistic. Luckily my man and my doctor caught me as I was falling and took quick measures. My doc had me start an anti-depressant that has really helped rebalance me, giving the hope and warrior spirit the leg up again over the fear and sadness...

It's a definite ebb and flow of emotions, and it can definitely get the best of you at any moment.

Diana1993 · 03-25-2009, 12:36 PM

I'm so glad this topic has come up. One piece of bad news throws me for days and I allow myself to try and find a coping method. None of us can take a persistant cough, nasal drip, nagging pain, or breathlesses for granted. I usually play the wait and see game and oddly when I least expect bad news I receive a call and at first think they must have called the wrong number. For the sake of my family and friends I try to deal with the anxiety on my own. Thanks to this place I know I'm not alone and don't have to put on the 'happy face'. We understand.
Hugs to you all,
Diana

jhandley · 03-26-2009, 04:47 AM

I am also a stage iv although have been in remission from a single liver spot for over 3.5 years. in fact I was dx 8 years ago this week the first time. I am a single parent of a 12 year old girl and have gone back to teaching full time this year. But I find myself easily upset and having anxiety some of the time. I am going to have some counselling for this.
The best thing I have found is keeping busy and in contact with people.

I do sometimes feel a bit time limited but most of the time I see the glass as half full.

Take my q10, my fish oil, my flaxseed and my vit H and try to take one day at a time.

This group has been a wonderful support to me!
Jackie (down under)

Believe51 · 03-26-2009, 10:22 AM

Ceesun, I still do not have the answers but wanted to let you know I am here thinking and praying for you. Hope you are feeling a little better today.>>Believe51

Julie2 · 03-26-2009, 08:01 PM

Being stage 4,trying to lead normal life and raising the kids: we are the strongest people in this world I think.
I have a 4 year old and 8 year old, it is such a challenging job for me to remain strong when I get raising tumor markers or bad scans. As Chrisy said sometimes I go into the healthy denial mode. But it is such a tough job and I cry sometimes "why me?".

Julie

Sherryg683 · 03-26-2009, 10:49 PM

You are not doomed, it may feel that way. But there is always hope. 3 years ago, I just knew I wasn't going to make it very long. Here I am, still NED and feeling great. I am actually back to my old normal self. There are many days when that anxiety hits me and I get terribly depressed. Especially when I look at my young children. The doubts and fears and remember those early days which I call the "black hole". When I start feeling that way, I try to change my train of thought and tell myself.."this is not going to help anything, just waste another perfectly fine day". I have wasted so many days going places that I didn't need to go. So I try to keep busy, having projects, playing tennis and being with my friends and family. I feel if I keep busy, I may out run the beast. I can't tell you it's easy but it doesn't consume EVERY moment of the day anymore. And like Chrissy said , if I do luck out and live another 20 years, I don't want to feel like I wasted them worrying all the time. I want to have some fun dammit! I get up every day, thank God that I have it to live, try to keep the bad thoughts out my head and go out and enjoy myself. I sometimes fail but then then tomorrows another day and I start over again. That's about all we can do, I wish so hard that I didn't have to deal with this. But then there are times when I have such an appreciation for life that it just makes me tingle. I never felt this way before I was sick, I just took things for granted. I do wish I could have learned this lesson another way because cancer sucks big time, but I do feel that I have learned something that most don't until it's too late. If my cancer does come back, I know I will be mortified, but I will have to deal with it like I did originally. Until then though, I am going to try my best to take my life back and be a better person for it...sherryg683

SoCalGal · 03-27-2009, 12:17 AM

Hi Ceesun-

I feel the same way. The roller coaster of emotions and thoughts. Fears and worries.

My kids are 19 and just about 21 and that is really grown, but I see they still need me around. That "mommy" pull never seems to diminish. Although I very much have my own identity and my own life, the fact that my kids seem to need me is a driving force in my desire to survive.

When I was first diagnosed, all I wanted was to live long enough to raise them, and I feel lucky that I made it. Even so, I still think of how messed up they would be if I die now. I'm not sure when it would feel okay to leave them. I used to think once they were in college and grown.

As Chris said, most people don't have their own mortality to confront daily.

I think it's just tough. Point blank crazy hard. It's not just living with an illness, it's living with an illness that does not have a linear treatment plan.

Suddenly we are asked to weigh-in on our own health care in ways that normally require years of study, schooling and instruction. That one factor would stress the hello out of any person. Then there's the insurance hassles, which seem to escalate at stage 4. Now we are not only questioning whether to do a test for medical reasons, but wondering if the results will give the insurance company more control over our care.

Add side effects from chemo and it's really a wonder that we all don't jump off a bridge.

Now I need a visit to the campfire (keeping your mind off breast cancer). Hope to see you there, Flori

Lien · 03-27-2009, 02:24 AM

Dear Ceesun,

I don't have mets, but I was in a car accident in 1993 and suffered neck trauma. At the time, I didn't know whether I would ever be able to function again. I was flat on my back for months and couldn't even sit in a chair. Soon after I found out I was pregnant and didn't know if I could take care of the baby.

At the time, someone taught me this trick, and I found it helped me. Perhaps it could be helpful for you. I gave myself a specific timeframe in which I was allowed to think about my fears and worries. Say: from 9 - 9.30 PM. Every time my fears or worries threatened to envelope me, I told myself: Not Now! Tonight you can dwell on this, but not now.

It didn't always work, but quite often it did. It helped me get through the day and it helped me keep up my hope.

Fortunately, after about 3 years, I found a PT who did craniosacral therapy, which helped me get better. I'm almost pain free now and can work and look after my kids.

When my eldest was 1 yr old, he had to pull the laundry out of the washingmachine and put it into the dryer for me. We turned it into a game, but I really hated that he had to do it. He's 13 now and I do all his laundry. Just to make up for the past. A past he doesn't even remember! He does remember that I was around all of the time. When my youngest (now 9) was born, I went back to work when he was 3 months old. I wonder which child had the better deal...

And yes, being a mother is a life sentence. My mom died of cancer when I was 40, but still I missed her a lot when my youngest was born. But when she died she said: "Ofcourse you want me around, and I would have liked to have been around, but it's ok. You can take care of yourselves. It's my time to go."

The fact that you don't feel like that, tells me that there's still a whole lot of living you need to do, so it's not your time yet.

Oh, and there's a visualisation exercise you could try: Picture a lovely little house, situated in a beautiful garden. The house is your haven of peace. No bad thoughts, bad energy or other human beings are allowed to enter your house. You can decorate it any way you like. The garden is lovely, just the way you would want it if you could wish a garden. People are allowed to visit you there. Around the garden there's a ring of roses. Lovely roses with a lovely scent, and your favorite color. In your pocket you have a remote control, and if anything unpleasant happens in your garden, like people being difficult, or taking away your energy, any bad thoughts that try to nestle in your mind, you use your remote to zap them out of your garden. They have to stay behind the roses. Then you find a place either inside your house or in the garden, where you can lie down and relax. Perhaps have a nice drink and think of nothing.

If you practice this a couple of times a day, after a while you can "conjure up" that feeling of being worry-free and relaxed.

Hope this helps

Love

Jacqueline

Shobha · 03-27-2009, 08:54 AM

Ceasun,

I do not have mets but I can relate to every one of those fears. My children are 6 and 4. I pray pretty much, every minute of every day, that I will be around to raise them. I have cried through every one of the posts in this thread.

This site has been my greatest source of strength and of course of knowledge that I gather here.

I am praying hard for you and for everyone one in this group! May god give us peace and please find us a cure soooon!

love,
shobha

Ceesun · 03-27-2009, 09:06 AM

thank you all for taking the time and effort to post your responses to me. It has given me so much comfort this week. Many of our feelings sure do overlap and I see that we really understand each others concerns on this issue. You know, I told my husband that I try so hard and then I feel slapped back down. But onward I will go, my daughter who is a crew leader at the university Einstein's just asked me to drive over for lunch on her break...a great surprise! She is the one I worry most about. So off I go, do not want to miss that chance of being together even if only for 15-20mins. I really wish I could meet some of you face to face. That would be a good thing! xo as Lady of Pink calls me, "Ceese"

Believe51 · 03-27-2009, 11:38 AM

Ceesun, I know that you are still dealing with these feelings, as we all are, but I feel pleased to hear some comfort in that voice of yours. Have a great time with your visit. What part of the school does she attend and what is her major??>>Believe51

PS: Do not forget that you are slapping right back, Ceese (smiling)

Ceesun · 03-27-2009, 01:23 PM

Marie--she is a senior at Eastern Michigan University working toward a Bachelors in Social Work. Thanks for your caring so much. Ceesun

SoCalGal · 03-27-2009, 11:20 PM

What I really wish is that our kids would all network/facebook and become online support for each other. I'm sure they have their own special set of issues as sons and daughters of warriors...mine are at SFSU and U of Oregon. Now that would really be something!

Lori R · 03-28-2009, 07:34 AM

My dear, dear sisters,
How can we doubt the presence of a generous, loving higher power when he has provided this site and an opportunity for such loving support and fellowship?

I stopped reading after Jacqueline's post and sobbed for 30 seconds. Dried my eyes and the next post was from shobha saying she had cried through every post.

The sobbing actually felt good, it was a brief release of all the stress, worries, fear awith the knowledge that I have a place to come to for support when I need it.

Ceesun - thank you for starting this thread. You started the gift of support shared by others.

Chrisy - as always, eloquent and a leader in liver met treatment. I think of your journey and hold you as an inspiration

Jacqueline - My biggest struggle regards my 16 year old daughter and feeling like I have failed her. I might PM you for some guidance on the things I can do NOW to provide her with what she needs to possbily be "on her own"

Jackie - What a beautiful story about the angel. Long story but I KNOW that there are angels. I am confident one touched my life 10 years ago. (I didn't listen)

Brenda - thank you for the reminder to seek help when we are in a downward spiral.

Flori - Great idea about the notion of our kids supporting one another.

On and on.....I just have to have FAITH. God has consistently provided what I need when I need it. From a loving family that was with me through Chemo, time to sit at my daughter's track meets and cheer her on, a husband that stuck by me and not the least...all of you.

Sorry this is kinda mushy...it is written from the heart.

Ceesun · 03-28-2009, 08:16 AM

Flori-I like your idea for our sons and daughters and to each one of you who posted--you are terrific. Ceesun

hermiracles · 03-29-2009, 03:29 AM

Oh Ceesun.... and everyone who has written in this post... thanks so much for asking the questions and having the courage and love to reply.

I am Stage 4 and just lately Ive had some good news... but I still worry. I relate to every single word of what you my friends have posted here... but honestly most of the time I just dont even have the energy to post...I am just so exhausted, thoughI seem to be getting some of my energy back with less of a 'tumour load'... I think!? My Onc has reduced my pain medications to see whether thats whats causing my drowsiness etc... and Im having another brain scan just to see if thats all it is... side-effects of meds... I hope so..... see I still worry (im SO tired just typing this

)but through it all I pretty much try most of the things suggested here (now where have I heard that before?) lol

) (Thank God you all have the generosity to share them)

And I listen & learn and come here for solace and support and love and education and to realise I am not alone.

While I'm sitting here, typing this, I can feel bone protruding from my left hip - I know I have mets there - do you think it is progression???

It can be endless eh?

So what would I do without you all ~ to be here to ask the questions and dare to try and share answers ~ you are each miracle workers and I dare to love each and everyone of you and risk taking each and everyone of you into my heart because who knows if any of us will be here tomorrow.... Im thinkin now of Lily and Kate and Lolly and others who were taken from us so suddenly recently...

... its so unfair this rotten disease... and now i betta stop typing and let the water works have its way.

I went to see the movie 'Australia' recently, not realising what an in your face movie it is about the Stolen Generations here in our country... at one point I started crying, but then I realised I literally couldnt stop..... even just looking at how beautiful our country is... without any people.. or story line I couldnt stop... just beauty can bring me to tears.. I guess the dam just burst.

So now I really better go.. thank you so much everyone... maybe by being here and reading I have a bit more understanding what people mean when they say 'you are so courageous'... I guess we are, I guess we must be... and full of love.... and I guess just for now a burst of energy!! lol!

Luvyas
Blessings all
Hermiracles

Just to wonder that maybe this whirlwind of emotions is common to all Stages?? I dont know.. maybe they are ... just less intense??