Need some TLC

Carolyns · 04-24-2007, 09:08 AM

Okay friends, I cry as I type. I am a stage 4 single mom of an 8 year old boy and work full time. Sometimes I feel like I just can't keep all of the balls in the air and today is one of them...yesterday, also as a matter of fact. I went through inScanity (a couple of weeks ago) and results were better than expected...so far. Brain MRI (clear),Cervical Spine MRI fine, CT and Bone scans fine. Perhaps some increased activity at T2 (shown on top of Cervical Spine MRI) still waiting to have Thoracic and Lumbar MRIs (scheduled for next week). Liver continues to improve.

What's wrong? Well I have this new little pea size lump just at the bottom of my port incision. Just came up. My CA 15-3 was 200 when we started and went down as low as 12 with Gemzar. Well in the last 3-months it has gone from 20 to 40 to 38 and now 50. That and the little lump on my neck is scaring the sh*&%t out of me. My doctor felt the little lump and said it is not a node. She doesn't know what it is and it is so tiny that she doesn't think it will show on the PET - it didn't on the other tests. Now she she has added a PET scan. She said that we are fine and she want to measure the active disease again. She said that perhaps we just have to switch off of Faslodex and add Lapatinib to the Herceptin. Perhaps not and we just continue with Faslodex and Herceptin depending on the PET and MRI results. She told me to take it easy and tried to convey to me that it is okay.

I know that this is nothing compared to the worry I felt about the Brain MRI and liver results. But these horrifying distinctions are lost on me sometimes. This fear and sadness feels cumulative sometimes. I just want this to GO AWAY. I want to wake up and have this be some really bad dream.

I am physically strong and I know that I should be gratefull for that every day. But, the mind part of this fight is sometimes overwhelming.

Sorry to dump here but this is how I feel right now. Thank you for listening.

Carolyns

hutchibk · 04-24-2007, 09:20 AM

Dumping is just one of the things we are here for, Carolyn!

I don't have any wisdom regarding what you are describing, I wish I did. Try and stay distracted as much as you can today... worrying about it will not make it go away, so try not to lose your whole day to worry! Do something that you love and makes you feel calm. Best wishes and lots of love.

Caroline UK · 04-24-2007, 09:25 AM

Carolyns,

I'm sorry, I only have a couple of minutes then I have to go, but I just wanted to let you know that I read your message and felt for you. I don't know what to say that would help. Some days are just so horrible, when everything seems dark and frightening.

I know you'll find a way through, and hope you can find someone you can lean on today. I guess that's what we're all doing here, some days more than others.
I don't want to sound flippant, but hang in there, something will come along to help make you feel stronger and better able to face things.
You're in my thoughts - sending a sisterly hug to you

Carolyns · 04-24-2007, 09:31 AM

Thank you Caroline and bhutchinson,

It helps so much to hear from you. No one else could understand this feeling but I have to get it out. Thank you for listening and making me feel like I am not alone. I know that this feeling will pass (it has to before my son comes home) and so I can get back to work. But for now I am trying to pull myself together. Thank you for your kind words.

Carolyns

Caroline UK · 04-24-2007, 09:50 AM

Carolyns,

Was about to close my computer down and dash off, but felt I had to respond to your second message. My own eyes were a bit shiny as I read it. I've longed so many times for this all to be a bad dream - there are times when I genuinely can't believe it's actually happening, and there's this overwhelming horror which I desperately want to escape from, and can't. I find coming here is the best thing in the world when I'm feeling so afraid and alone - like you said, here is where I feel most understood. I'm so thankful for it.

It seems to me that if you can't feel better by the time your little boy comes home, well, then that's how it is, and not surprising. You're only human, and there are bound to be times when it feels just too much to bear for a while. Maybe it'll be a time when you have a cry and big bear hugs together, so neither of you feel you have to pretend for the other that you're feeling brave.

Jean · 04-24-2007, 10:59 AM

Dear Carolyns,

I just read your post and I wish I could make it all go away.
Raising our children is difficult enough without having to deal
with breast cancer. It is very diffiuclt not to think of doom
when your spirits are down.

The only thing I can offer is the thought that we never know
what will happen from day to day. Just last week here in the
States a madman shot a campus full students in Virgina. Many
young and beautiful people were gunned down and killed in the
prime of their lives. My point is our life is fragile and we know
best since we fight this nasty hateful disease each day.

Do not give up and feel helpless - please understand that each
day new drugs are being tested. Just look at how herceptin has
changed the entire her2 population of bc patients alone.
Please continue to dig deep in your soul for hope.
Enjoy your son and cherish each day. Please know we are also
here to help lift your spirits. It is not easy - but you are not
alone.

Will keep you in my thoughts and sending you a big hug,
Jean

Joy · 04-24-2007, 11:17 AM

I know, I know, I know how you are feeling and I'm so, so sorry 'cause it hurts. And these riduculous, ugly lumps and bumps can really throw us. Maybe I could move to S. Florida (it's really icky here right now) and us single moms could give each other TLC when we need it. I'm really good at it when I'm not miserable

.

Let us know how you are feeling and what any tests say and know that you and your son have a lot of love coming at you from every direction. I have an 8 year old girl and she cracks me up. I hope your punkin' will bring you some good old fashioned chuckles too.

Carolyns · 04-24-2007, 11:28 AM

Hi Jean, Thank you for your kind words.

Joy, Come on down. The weather is great here...until hurricane season starts. I know that you know how I feel. Thank you for your kind words, as you know, they mean so much on days like today.

This too shall pass. I just am down in the valley today.

Love, Peace, and Hope,

Carolyns

RobinP · 04-24-2007, 11:38 AM

I wish I were in nice Florida too to give you an good TCL hug and smile. You will get through all of this. I have an eight year old too and he is what makes my world and helps me to see the good of life. I don't know what I would do without him. I just have a good feeling that this new bump you feel will be fine, but do get it checked out to put your mind at ease. Praying for you

Yorkiegirl · 04-24-2007, 11:51 AM

Carolyns sending you a BIG HUG. I know what you are feeling. Like other's have said I wish I could give you teh hug in person.

Mary Jo · 04-24-2007, 01:20 PM

Hi Carolyns,

I guess there isn't much more I can add to what the others have said, but I can offer you a HUGE HUG, LOTSA LOVE AND A SHOULDER TO CRY ON. Well, a cyber shoulder it will have to be .................................sorry!

Yes, it all can be overwhelming at times. And, I think it's fair to say we all have wished for our OLD normals to be back again and this NEW normal stuff to be GONE.

God's Peace I pray for you,

Mary Jo

fauxgypsy · 04-24-2007, 05:30 PM

Today an aquaintance told me that she thought I was very brave. I told her that brave has nothing to do with it. She said if it was her she would probably just give everything up and hang out in Florida. I tried to explain that I was doing this for my girls, and my grandchildren and my husband. Not just for me. As hardship goes, this has not been the worst thing in my life. But I cannot imagine being in your position. I think daily of all of you who have small children with or without husbands. I cannot imagine the strength that you need to get through this or the fear. I have constantly been thankful that my children are grown. I have had terrible problems with depression in my life and the only way I got through it was to keep the wellbeing of my family first and foremost in my mind. Just remember that this moment, this hour, this day is all you have to deal with at this moment. And it is okay if you drop a few balls now and then. I will keep you in my prayers. Leslie

jhandley · 04-25-2007, 01:28 AM

Hi Carolyn
Here's a hug from another stage 4 single mum with a 10 year old daughter who means the world to me. I am currently NED and back working but have my down days too. I live in a small country town in Australia. Keep in touch.
Kind regards
Jackie

Vanessa · 04-25-2007, 10:05 AM

Hi Carolyn,

I am another stage IVer and although my children are grown, my husband is divorcing me, so I am alone (or without a supportive husband) in this fight. I have other family members who are supportive, but I understand how scary it can be and I am often fearful of what my future holds and whether I will be able to support myself. I know it must be harder when you have to worry about the future of your children. I hope you have the support of other family members and you definately dumped in the right place. Lots of hugs,

Vanessa

Carolyns · 04-25-2007, 11:50 AM

Robin, Vickie, Mary Jo, Leslie, Jackie, and Vanessa,

Thank you so much for your kind words of support. I don't know why but just being able to expose the raw and sometimes negative emotion of this journey is helpful. I am not one to complain and frankly most of my "healthy" friends and family could not handle knowing that I sometimes feel this way. I need them to be strong for me and they seem to mirror my emotions and fear. So I come here and you always know the right things to say to hold me up until the fear subsides or retreats for a while.

Thank you to all who helped to get me from yesterday to today. It is a new day and I am moving forward.

Love, Peace, and Hope,
Carolyn

theresaw · 04-25-2007, 12:02 PM

Carolyn,
When I have my down days, I find a movie that will make me laugh. I just take each day as it comes...some good days, some not so good days, on the not so good days i try to think of happy thoughts or find something that will lift my spirit.
You are in my prayers

sassy · 04-25-2007, 08:16 PM

Carolyn,

So much of the time we have to show "the strong side" for everyone else in our world. I really don't think anyone who has not been down this road can come close to understanding----so I am glad we are here for each other. My boys were 12 and 14 when I was diagnosed, so the fear of not being there for them was huge.

Wishing you strength and comfort---know we are all here for each other.
________
ECIGARETTES

LindaC · 04-26-2007, 02:24 PM

Carolyn,
I wish the best for you there is not much I can say everyone already said it.Just keep thinking positive and believe,remember your son he should bring a smile upon your face.Lots of HUGS are being sent to you.
LindaC