just need encouragement
 

I was back in hospital again for 10 days, my blood levels can't seem to stay up and the exhaustion is unbelievable! Since I have been home I go from lazy boy to bed and that is about all. I do manage to get breakfast on the table my husband goes to work late to help me get the kids off to school. stairs are almost impossible to climb. I'm scared...I guess that is what it boils down to...And I feel like a lousy christian for not trusting God for my peace , especially when I am reaching for the ativan! I watched my mom deteriorate from MS when I was a kid and I hate that my kids have to watch me now!! I know that All things work together for good for those who love the Lord...I am just scared at what else is going to be stripped away before the end comes. I am jaundiced as well and my liver functions are way off the charts..I have been dealing with stage 4 since 2004 and I have never been this bad off..I wonder if this all is a reaction to a blocked bile duct which they stented and the tdm-1 and after breezing through many other treatments..tykerb, taxol, vinerolbine, xeloda, all the hormonals, herceptin,carboplatin, and ac. So right now I have tumors in the liver, stomach, and spine...I'm not really sure where I am going with all this I am eating red meat, grapes, chlorphyl, (sp) pineapple, bananas, gatoraide to help with the dehydration from the ugly d...although I am thinking this is my body's way of detoxing also treatment has been delayed 2 weeks hoping for my blood to pick up and then I will get a dose reduction of tdm1...I just hope you guys have some insight I wonder if it is time to call it quits or if that is even my call to make do i keep going as long as the onc is willing to treat.. I have had 4 tdm1 treatments do I wait and see what scans say...do I ask for another chemo to be added or will that make things worse for the blood levels...I feel more than discouraged I have always been the one "doing" now I have to humbly accept help....ARGGGGGGG. Thank you for letting me vent..I have wanted to earlier but the energy to get words down was too daunting...even showering or getting to the bathroom on time (thank goodness for tenas) is a feat! Please any words of wisdom or encouraging stories from experience would be so appreciated... I hate sounding so needy...\thanks again, Tammy

Re: just need encouragement
 

Tammy,
Your story is so inspiring. You are so inspiring. I hope that in the days to come you build your strength back. I'll be thinking of you.
Warmly
Karen

Re: just need encouragement
 

Dear Tammy~
I don't have any words from experience as I'm still fairly new to this process. However, you sound like an incredibly strong and beautiful woman both in your courage to fight and your faith. I will add you to my prayers and wish you regained strength.
Jeri

Re: just need encouragement
 

Tammy, I am sending you big hugs and encouragement from Ontario. Praying that the TDM1 is working its magic for you.

Keep strong, you are one amazing Warrior Woman!!

all the best
caya

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Honey, don't ever feel like you're a lousy Christian. I just had this conversation with a friend of mine who lost a sister-in-law to cancer (not breast--some rare type). My friend is having survivor's guilt and admitted though she's a Christian, she fears dying even though she knows she's not supposed to. You're not alone in how you feel. As long as you profess belief in the Lord, you're a good Christian. God knows we're imperfect beings. So please don't beat yourself up over that. Prayers are being said for you.

Re: just need encouragement
 

Oh my friend Tammy~
You deserve peace in any form you can find it, whether it be in your Faith or in a bottle of Ativan.
We deal with so so SO MUCH, and so often at the bottom of that long list is raw fear. Sometimes I think it's easier to distract & deal with the all the other stuff, but that fear still seeps through the cracks.
I hate every moment that you struggle with this monster and all the horror it brings with it, but know that I, we, your family here, hold you in prayer, love and light and offer whatever it is that you need to get through it, whether it's from moment to moment, day to day, treatment to treatment and even year to year.
Hold tight and stay strong, but when you can't, lean hard.

Keeping the Faith~

Jessica

Re: just need encouragement
 

Dear Tammy, you have been fighting it for an amazing 8 years !! I am touched by your strength and courage! I hope things will get better and you will resume your energy very soon! Hugs to you !

Re: just need encouragement
 

Tammy, stay strong! If you read what I reported about my first months with TDM1 you will see that what you are living is not a bad sign. I am 9 months ahead of you I also needed a stent just before starting TDM1 and I also was exhausted (not tired, exhausted) the 10 first rounds. I could not stay up the 2 first weeks of every round. The third week was better but I was sooo tired. They told me they never had such a bad case. BUT the first scans were very encouraging so I resisted. Then they became good. Now I feel tired but not exhausted and I can live well. You are in a difficult period because your body has to recover from the stent story which is a lot and also cope with the fatigue induced by all the cancer cells being hit! PM me if you need. Hugs Michka

Re: just need encouragement
 

Hello Tammy,
You're exhausted and that's normal and that makes you depressed which is also normal. What Michka says about the TDM-1 and others is very encouraging. Read books rather than watch televison - books really take you to another world and are wonderful whereas TV can often be depressing and cause anxiety.
There's been a lot of talk about ER+ people saying on anti-hormonals longer so maybe ask about that also.
If the Ativan isn't helping with the depression and anxiety, maybe your doctor can subscribe another one.
Make sure you get some good sleep and have good friends come over and visit but ones that understand your fatigue and situation. Friends are very healing. You need a little social interaction.
you're strong so it's just a matter of time until you get back into fight mode.
hugs and love
sarah

Re: just need encouragement
 

Tammi,
I've been thinking about you a lot, and am sorry to hear you had to be hospitalized again. Everyone who has posted is right. I could just say ditto but you know that's not my style!

TDM1 is not vanilla herceptin. For me I had flu like symptoms and it whacked my liver functions. And I was starting from everything basically being "normal" and minimal tumor burden. You've been through a lot over the past month and the fatigue is real - but give the TDM1 a chance. And be gentle with yourself while you continue to try and do "all the right things"

We know, the spiritual battle is sometimes even harder. Jackie's right, it's easy to push the fear aside with distractions, but it is still there. A few years ago I thought I'd give up fear for lent. I'm not catholic so i didnt get you are supposed to be sacrificing something,but it seemed like a good idea at the time. Of course it backfired and all I could think about was the fear! Who wouldn't be fearful.

I'm visiting my sister and always like going to her church. On Sunday, the message was about Peters denials of Jesus, and how profound a failure that was for him...and how we all fail in our faith, or our courage, or a million other ways. That does not make us lousy Christians, it's the whole reason we need grace. Then I had a "God moment" when lyrics in the closing hymn included "help me with my lack of faith" which was EXACTLY what I had been crying out to God the night before.

Most people do not come close to the kind of fight we've been engaged in for so long. So again, be gentle with yourself. Keep trying to nourish and rest your body as best you can.

And lean hard.

Much love,
Chris

Re: just need encouragement
 

Awww, Tammy, what a lousy few weeks you have had...chock full of all those only-human kind of fears that haunt and haunt. And as a mom myself; remembering the trauma of the days when I could barely crawl across a room; forget about walk across it; for me it was really about the kids. I wonder if it is the same for you. You are feeling so so sick. You hate for the kids you adore to see you feeling so tired and sick and are loathe to even think about the unthinkable....
"I just hope you guys have some insight I wonder if it is time to call it quits or if that is even my call to make do i keep going as long as the onc is willing to treat"

Every single one of us (who has read your gutsy and honest thoughts) wants to rush into your home, scoop you up and hold you. Comfort you. Get on the floor and play with your beautiful kids. And I bet you are just too darn tired to think outside the box for yet another treatment or another approach.

You are struggling with your faith. And who wouldn't, right? Where is the justice (I am fond of shouting in my daily prayers). Spiritual counseling with a nun (and I am not Catholic) was a huge help for me. Maybe it is an option in your area.

Rely on your sister's here for the wisdom of their experience. Michka, Sarah, Chrisy all have good advice. My only two cents to add is that I would consider sending a biopsy for a tumor profile to see if your tumor has a mutation that matches to an approved treatment.

In the meantime; rest- knowing all of your Her2 sisters here would rush in your house and scoop you up and take care of you in a jack rabbit minute if we were neighbors; but since we live in the hinterlands, we are holding you up in prayer and meditation and love instead.
Stay with us and keep us informed on your path.
Love and hugs, and love and hugs,
Kim (from CT)

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Tammy,
All good advice shared so far. I'm so sorry you have so much to deal with right now. I am in awe of the fact that as poorly as you feel, you still get up and get breakfast for your family. That effort, knowing how utterly exhausted you are, speaks volumes about how much you love your kids!

I hope once they're on their way to school, you do as our friends here have said, and treat yourself kindly and gently. Rest is what you need...and I don't think the Lord is particular about how you get it. Seriously, I've come to see Ativan as one of his healing gifts. When steroids are coursing through my veins because my brain mets are acting up...Ativan is a way for me to survive it all.

And, I know when I'm exhausted from treatment...having to accept help, when like you, I've always been the giver...depression comes on fairly easily. If you haven't already, may I suggest that you talk with our onc about some kind of med to ward off the worst of those feelings. If you try it, and it doesn't work...you stop. But...if you don't try, you'll never know...it could have helped you feel better physically and emotionally too.

Thinking of you, and lifting you in prayer,
Denise

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Oh please never apologize for feeling "needy", if that is even the right word. What you are experiencing is deep and real. We understand it. I don't believe that taking Ativan suggests a lack in faith or a weakness. We need to do whatever is offered to us for relief and comfort Admitting powerlessness is a powerful thing to do. I admire you beyond words. This is a time to let people help you. Tell them things they can do for you. Take the kids to a movie, bring over food etc. conserve your strength Above all, keep the faith.

Re: just need encouragement
 

You ladies are the best!!! Thank you so very much!! I wish we could all cyber zap us into the same place sometime and give out all these hugs we have!!! I'll bring the gatoraide!
Tammy

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I have no advise but want to say that you say you are weak but I see you as strong beyond words. To have gone thru this for so long and to still be putting one foot in front of the other everyday is amazing. One day at a time, one second of a time. I pray that you start to regain some normalcy soon. We just have to trust in The Lord as no one knows what he has planned for us. No one. U r amazing. Rest, do whatever your body is requiring right now and think about the now not the later. We r all here for you.

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Tammy - I hope it is all just a sign of the treatment wacking those mets. You are a true warrior.
A xx

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Hi Tammy,

I had to reply. Not because I have any advice on what you should or shouldn't do, because I do not know. I've never been where you are. But, I, too, am a Christian and I, too, love the Bible verse..."For we know that all things work for good for those who love God and were called according to His purpose." Romans 8:28. Of course, we both understand that our idea of "good" and God's idea of "good" could be totally different. Ultimately, it is/will be good....however, at the time, we may not see it as such.

Tammy, I'm not sure what will happen as far as your illness goes but I am sorry you are going through all you are. However, I am confident that your Lord goes before you and He knows what will be...."all the days ordained for me were written in your book before one came to be." Psalm 139:16. Trusting is tough stuff. I know. I fail at it OFTEN.

In our Lord's eyes, we are not failures. We are His children. He loves you.

As I finish typing this I ask God to cover you and surround you with His beautiful peace as you "wait" on tomorrow. I pray He will help you to live with only "today" ~ one day at a time. Today is enough for now. Praying strength and healing.

Sending my love to you my "sister!"

In Christ.....

Mary Jo

Re: just need encouragement
 

Tammy, I wanted to cry when I read your post. Geez. You sure are going through so much,and I sure hope it turns around for you soon. ;)

Re: just need encouragement
 

Tammy,
Just thinking of you, and hoping that today finds you a little less weary. Have you been able to get some rest? When I have trouble resting, sometimes I try to envision myself lying safely in the arms of Jesus...sometimes like a baby...sometimes as a little lamb...and sometimes as the full-sized me, like in the Footprints in the Sand poem (and he never even struggles under all the extra weight I'm lugging around these days :) ) It doesn't always help me to sleep...but I find it calms my spirit...and puts my troubles in perspective.

Lifting you in prayer, my friend...
Sending a warm cyber hug...filled with healing light,
Denise

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Denise, thank you so much for asking.. I seem to be getting a bit more energy back..i even went out to value village yesterday for few minutes!! I love the idea of sitting in Jesus' lap!
Hope your scans all turn out great!!!
Tammy