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Joy 02-06-2009 11:00 AM

Hi guys
 
I'm here and thank you for thinking about me. I have been in a physical and mental funk for awhile. I definitely feel fatigued from E/C and I don't like it at all. Last week I developed a really high fever and 2 odd pains, get this-one in my right inner thigh and the other in my left forearm. Certain movements were very painful and my mobility was hampered. It makes no sense. I started on Invanz (IV antibiotic) because of the fever and blood cultures were taken-all of which came back normal. So I don't know if I did 7 days of antibiotics for nothing or what. My normal temp is usually 97 ish so for it to reach 104 for 2 days seemed alarming. It is driving me crazy as to what all of it would be.

My last chem panel showed some good things and that was after 2 treatments. ALT/AST were about normal, alkphos was finally coming down into 300 range from 400plus. My CA27.29 also came down from 400plus to 300 range. I just hate to get to excited because that happened on the DM1 trial too and then things got worse in the liver.

So I have been in bed a lot, slow moving, slow thinking, feeling like a lousy mother/friend, whatever. And worrying a lot about how the E/C is working and what if my liver just can't take any more drugs and if my days are really numbered. I just feel very little hope and I don't exactly know why. I feel like I always look stupid and pale and old and, of course the no hair thing is making me feel more so.

I am just a big whiny pants I know and I am sorry. I am just in worry mode-which I know helps nothing. I also know that I love all of you so much and I know that you have felt these things before and that our struggles are unique and some are much harder than mine-which is why I hate to post when I feel like this. I think about all of you everyday and keep pratying for some miracles-even little breakthrough miracles would be great.

Shobha 02-06-2009 11:20 AM

Joy, please don't call yourself whiny, my friend. You make me cry.
You are battling so much and there is nothing wrong with taking things slowly. Things will look up very soon. Our collective prayers will have to work. God has to bless you with the right weapons to win this battle.

Sending lots of postive vibes your way.

Lots of love,
shobha

schoolteacher 02-06-2009 11:27 AM

Joy,

I am glad to hear from you any way you feel. When I joined this board last year, I recognized you to be a warrior. Hope you get to feeling better.

Amelia

Faith in Him 02-06-2009 11:30 AM

Dear Joy,

You have every right to whine. You are going through a difficult time right now. I am lifting you up in prayer as I type this to you. Just hang on. There will be others to encourage you soon. Even though you understandably do not want to get too exicted about your blood work, It is good, so hold on to that for now.

I too understand being upset with our physical apperance as well. I often look in the mirror and do not see the 37 year old women I used to be before bc. But then I have to remind myself, that even though I have thin, graying hair, one breast and and one arm larger than the other, I am still here for the kids. And fortunately, they take me as I am.

I pray that you will able to see a little bit of sunshine in your day today. I know it is not always easy but we are here for you.

Tonya

Terri B 02-06-2009 12:16 PM

Joy,

You said you don't like to post when you are like this; that's exactly when you SHOULD post. You need to be picked up spiritually, and this is the place for that.

Please take comfort in this: There are many, many people here praying for you. Many people only read and never post. They are praying for you too!

{{{{{{{{{{{Joy}}}}}}}}}}}}


vickie h 02-06-2009 12:24 PM

Joy,

So good to come here and see your post. I have been praying for you daily and thinking of you always. We face the same trials and I know how you are feeling right now. I, too, have done the "numbered days" thing these days (mainly because they probably are), though I realize that all of our days are numbered...it's just how many? As far as you whining, please don't even think that. You are merely processing something that is so profound, so mysterious, none of us have the answers, and crying can be so cathartic and good for us.
I am watching the rain fall outside, as if all of our tears have been combined at once, and are dropping to ground in hopes of new birth and spirit and hope.
From all of us here with no hair, no breast, no energy, and fear of the unknown...I send you my deepest love and hope today, Joy. You have always been there for me when I was without direction. You have inspired so many and given us the gift of your friendship. Thank you.
I will continue to pray for your health and comfort as God wraps his loving quilt around your shoulders. You, a whiner? I don't think so, just a beautiful woman who is need of our support, which we offer freely.
Thank you for checking in. I love you, sweet sister, Vickie

Madge 02-06-2009 01:44 PM

Beautiful Joy-

Know you are loved here. That is the beautiful thing about this site. You can cry, whine, spit nails or any other thing that will help get you through this rotten time. I too, am praying for peace and uplifting for you. Your picture with that brilliant smile is what we see. Cling fast to that and to those of us here. We love you and are here for you. Sending you hugs beyound belief!
And Keep posting...we like to hear from you.

Carolyns 02-06-2009 03:28 PM

Hi Joy,

I guess that it is times like these that your name adds pressure to keep up the happy face. We are here for you for the good, the bad and the ugly (although you could never be ugly). Please vent away and share your feelings and fears. I have been told it helps to get it out even though for some it is hard to admit or share the darker feelings.

I hope that this chemo kicks the cancer to the curb and you get to feel more like your old self again soon.

Love, Hope, Peace, Carolyn

vickie h 02-06-2009 05:11 PM

Well put, Carolyn...AMEN! Love, Vickie

jones7676 02-06-2009 06:22 PM

I understand your frustration and hurt....I hope and wish for positive results for you. It must be so hard...I hope that something works out positive for you very soon...I thought Carolyn did a great job too!

Mary Jo 02-06-2009 08:41 PM

Aww Joy...I love you and think you are one special lady. You have been through so much and "whining" as you call it is NOT whining at all...just you telling us how you feel.

I ask our Lord to give you His strength and peace to get through what you need to get through.

Love you sis........

Mary Jo

Yorkiegirl 02-06-2009 08:42 PM

Joy I can't add any more to what's already been said.

Just know I'm sending lot's of prayers and hugs out to you.

Jackie07 02-06-2009 08:59 PM

Hi Joy,

Hang in there. Prayers and hugs are on the way.

sassy 02-06-2009 09:12 PM

Joy,

You could never be a whiney pants! We love to hear from you in any way.

Keeping you in my thoughts and prayers.

karenann 02-06-2009 09:30 PM

Please know that you are in my thoughts and prayers. I am so sorry you are not feeling well. I think this will pass and you will feel better soon.

Hugs,
Karen

Jean 02-06-2009 10:33 PM

Dear Joy,
There is very little to add (our other sisters said it well)
but remember you are extremely brave and strong, a
tough fighter....it is perfectly normal to feel a bit worn
down. But knowing you - you will pick yourself up and
kick it back like you have always done.

Everyone here loves you and prays for you as I know you are feeling those loving vibes.

Also, you couldn't be a bad anything - even if you tried,
so except your pretty little no hair head and know that you're beauty is within and it is so strong and powerful
that it flows out of you....hey you're Mother didn't name you JOY for nothing....

Keep us posted and know you are loved.
Hugs,
Jean

chrisy 02-07-2009 04:23 PM

Joy,

Battling a 104 fever is no small thing. You must have felt very crummy physically - and that always impacts my spirit as well.

I have loads of hope for you.

One foot in front of the other, dear Joy, and don't forget to breathe.

Lien 02-07-2009 04:36 PM

I'd much, much rather hear you whine than not hear from you at all.

You have my permission to whine, whether you are entitled to any whining or not. ;-)))

It's what we do from time to time. Shall I whine a bit about my infected tooth? There's nothing worse wrong with me, but it makes me want to run to Mummy and complain about the swollen jaw. Mummy's no longer here, so I whine to my kittens. They just purr and that's all I need, really.

But if I wanted to whine about cancer, I'd come here. It's a great place.

Hugs

Jacqueline

lexigirl 02-07-2009 06:33 PM

Sending you hugs Joy. Please don't stay away for long afraid that you are being whiney. You are a beautiful girl inside and out. We like to be here to read the good and the bad with you. You aren't alone in this fight.

Hugs,
Lexi

caya 02-08-2009 05:33 AM

Hey Joy,

Nice to hear from you, you are not a whiner, you are a great gal who has not been feeling well lately. You are a real trouper Joy - You have been through alot and I can only commend your fighting spirit.

Sending big hugs from Canada.

all the best
caya

Mary Anne in TX 02-08-2009 07:19 AM

Hi Joy!
Please keep telling us how you feel, what you think and, well, whatever is happening with you. Your honesty is so helpful to us all. You speak of your experiences, but you also speak for all who are walking the same walk. Remember that love sees through love's eyes....seeing you only as beautiful, worthy, loveable, and so important.
I'm prayin' for this treatment to keep on working hard to destroy the bad cells and let our "cutie" Joy get back her energy, sparkle, and hope once again. Much love and belief, ma

Midwest Alice 02-08-2009 07:39 AM

Hi Joy`, I agree with Mary Ann, what ever your thoughts and feeling are they are very important to us. I read your post and I just want to give you a hug. You're so strong and in touch with your feelings. Your teaching me that I am going to be OK.

Have a wonderful day,
Love and Hugs,

nitewind 02-08-2009 07:39 AM

Joy, there's really nothing more that I can add, the others have expressed my feelings so well. I was just delighted to log on and see your post. You are always in my prayers.
Hugs

karen raines hunt 02-08-2009 02:00 PM

Dear Joy,

So sorry to hear about the high fever and pains. I hope those are gone forever!

You are the first bc survivor that I talked with in Fort Collins. You led me to this site. I don't post very often, but do read posts regularly.

You are a great mother and a great friend and I am confident you will feel better!

karen

sally 02-08-2009 02:47 PM

Hi Joy, I also had alot of pain in my forearms. I got it 2 hours after my last treatment. My Dr. said it sounded like I had nerve damage. I am currently on 4 tykerb daily and Gemzar. I have been having a hard time with the Gemzar and I haven't been NED in a couple of years now. I know what you mean when you feel your days are numbered. Good luck to you and getting the perfect cocktail. I always look forward to your posts. Hang in there and be strong. Sally

Paty 02-08-2009 07:50 PM

Sending you my love and prayers and big hugs. It was good to hear from you and hope that soon you will feel better.

Debbie L. 02-09-2009 08:55 PM

Joy, I am so appreciative of your honesty. Have you thought about journaling or writing in other ways that could help others dealing with cancer learn how to be clear about their feelings? You have a real talent for expressing yourself in a way that is not at all whiny but neither is it sugar-coated. That honesty and open-heartedness really resonates with readers. At least it does with this reader.

I hope that having this forum as a place where you can be honest, and supported, is of some help.

I don't mean to minimize (at all), the enormous pressures that you are dealing with. It is difficult enough to face hard things when we are feeling well - but to add in fatigue is just so hard.

So (lecture of sort follows)- being in bed a lot with no energy is not what defines being YOU. Being YOU means you are fully "there" for your kids and your loved ones, when you are able. Your loved ones do not value you for your ability to get up and "do things". Your preciousness to them is not in the tasks you accomplish. It has nothing to do with that (although of course, they appreciate those things, when you are able to do them). They value and need you most for your loving presence. If you allow yourself to be distracted with concerns about what you can't do (which alas, you cannot control), you are a little less there for them. I know that it is very easy for me to say and very hard for anyone to do - but I hope that you can try to let go of your regrets about what is not - and focus on what is. What is, in your life, is (I gather from your other posts), a lively and wonderful connection to special children and adults. I encourage you to savor that and to cherish it. Savor it as if it were your last moment to do so (even though it is not). I wish that we could ALL do that - savoring this moment as if it were our last. How rich life would be. But daily stuff does get in the way, for all of us. Still - not a bad thing to strive for.

With love,
Debbie Laxague

harrie 02-11-2009 11:47 PM

Hi Joy.....aka ms whiny pants....hahaha, that was cute.
You my dear are free to show all your highs and lows to all of us. That's what friends/sisters are for. Right??!!
Hows your WBC been? Are you feeling better?

If you feel like it, we would love to have you join us by the campfire. Its a great place to hang out and we all just breathe deeply and snuggly up together.

Much hugs, love, and peace to you my friend...
Maryanne

PS....and BTW, with that beautiful face of yours, hair or no hair, you are always beautiful. Really and truely girl!

Believe51 02-12-2009 02:06 PM

Joy, if you have not joined the campfire yet, please do. I have been looking for you and need you to drink up this iced latte before the ice melts. Come on over, I saved you a place right in the middle....this way no one fights over you!!>>Love>>Believe51

naturaleigh 02-12-2009 06:34 PM

Hey Joy,

When your mother named you, she knew what she was doing, she should have given you the middle name of inspiration because that is what you are, a Joy and inspiration!!

I love reading your post. You totally amaze me by how you can feel so rotten and still come here with happiness and laughter in your heart (whinny pants!!). That's a riot!!

I am praying for you daily and hope your treatments get better for you and you are back on your feet soon (but not too soon, make sure you don't overdo).

harrie 02-12-2009 11:49 PM

Joy, got a new name for you......The Magnificent Warrior!! So please toss the Whiny Pants in the rubbish!!


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