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Cheri

Sad Too

17 posts in this topic

Hi Everybody,

 

I guess it is the day for sadness. About year and 1/2 ago, we found out my husband has CLL - Chronic lymphocytic leukemia, which is a slow growing leukemia. The problem is, he has the aggressive kind. This may sound terrible, but I was almost glad when I found out I had Slcero because it stopped me from focusing on him so much. Since January, he has lost about 18 pounds, and I kept asking him about it, and he said he wasn't eating junk food anymore, and that was why. Well, finally, Monday we got home from a three-day trip of celebrating our 18th anniversary, and Tuesday I asked him to weigh himself, and he had lost three more pounds. Thursday he called his doctor in Seattle - Seattle Cancer Care Alliance, and they wanted him to come the next day (yesterday) to have a CT scan of his liver and spleen which worked out well because I was having a CT scan of my lungs and heart in Seattle in the morning. It's about a 2 1/2 hour trip one way from where we live. He finally admitted that he was concerned about losing weight, being more tired, and he also discovered a swollen lymph node in his neck. Before this, he had to have a blood test just for general check up stuff (cholestoral- spelled wrong) which he got done on Thursday. Then when we got home from Seattle yesterday, there was a message from his regular doctor here that said he didn't want to alarm him but his white count had gone up considerably and said Denny (husband) would be getting a copy of his blood results this weekend and wanted him to know that the doctor had seen the results of his blood test. On the message he left his cell phone and home phone numbers for Denny to call him when he got the results. The mail hasn't come yet, and I hope it never does. I'm really scared. I can handle anything with me, but I have a really hard time handling anything with loved ones. I am very blessed to have a warm, loving husband and can't imagine anything ever happening to him. Sorry for rattling on, I just keep all this inside becaue I don't want to scare the kids or him, and I'm basically a very private person. I try so hard to be positive, but sometimes it's so hard. Thanks for listening.

 

Cheri

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Hi, Cheri. From one privacy pirate to another... This is the place to let it go. First, all of us truly care; second, everyone needs an outlet. This particular outlet is full of receptive, caring people who really listen. May bless your heart be blessed for having to deal with sclero on top of your husband's condition.

 

I know how hard it is for me to talk with my family and friends about my illness, and I still struggle with wondering if they think I'm a pain or boring because it seems like I never have anything "good" or "positive" to talk about. I usually direct the conversation around their lives. The irony is that I moved across the country when my condition worsened so that I could be closer to family and have their support. (Maybe sclero has twisted my logic among other things.) One thing I do know is that if I sense that someone I love is upset or stressed, I must find out what's wrong and do whatever I can to help - even if it's only listening. It would drive me crazy knowing something was wrong, but not knowing what it was.

 

I don't know if your family is aware that you're going through such agonizing stress. I would never presume to give anyone advice, but maybe it would relieve a bit of your burden to talk with one of your kids or someone else in your family. I'll hope that the news you get will include or offer a viable, healthy solution. Please remember to take care of yourself.

 

Keep in mind that we're here for you, and please let us know how you're doing.

Namaste ~ Fictionite

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Cheri,

I am so very sorry that you are going through such an emotional nightmare. You and your husband are in my thoughts. All the best to you both.

 

Sherion

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Cheri

 

I am so sorry to hear of your news. Somewhere within, I hope you will both find the strength to help each other through these trying times. You and your family are also in my thoughts.


Sending good wishes your way!

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You sound like a really strong person but now is the time to let others help you & your husband through this scary time.

I'm sending warm wishes and positive thoughts your way, and I hope all will go well for you and your husband.

Annie N

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Thanks everybody, for your kind words and thoughts. I know everything will be okay. Just scarey right now. You are right, I need to let my family in more, I just have always been the strong one - maybe sometimes too strong. Now it's hard to find myself in a place of need. I don't know what I'd do without all of you. You are all a source of inspiration and strength, just reading about what you are going through and how supportive you are of each other. I hate to be a bother to anyone, and this is just really different for me.

 

Hugs to each of you,

 

Cheri

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Cheri,

Bother us we love it.

Even the strong cry.

I know I do.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Cheri,

I am so sorry that you have all of this to deal with. I totally understand about dealing with things for yourself is much easier than with others. Just know that we are here to listen and support you. Please keep posting and keep us informed.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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You will make it through this tough time. It's okay to feel everything you feel right now and know we're here for you anytime!


Soft hugs your way,

 

Michele

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Dear Cheri,

 

It's understandable, that you would feel scared as you are. But, maybe it might be good for you to let your family in a bit more... some people don't know what to do, but are there in a heartbeat, if just let in.

 

As for feeling the need to be "the strong one"... been there, done that, but right now, you need to conserve some of that strength, I'm thinkin'. When people THINK we're strong, but could really use some oftheir support... they won't know unil we say something.

 

Don't get me wrong, though... we understand the Sclero part of what's going on with you... the feelings you have, the symptoms, many of us can relate to. But... what's going on with your hubby and how you're feeling... both of you need to support one another. Also, the rest of the family, however extensive... needs to know you and they can talk with each other.

Believe me... I'm not trying to be a "know-it-all", because I don't ... know it all...

but I've sat in the same boat... especially over the last few years, just as I know so many others, here... also have.

 

You are a part of this very large cyber-family and we are here for you always, please don't forget that, ever.

 

Soft Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks, again, everybody. I appreciate all you have said. I feel a lot better today and know everything will be okay. I usually try to be positive, but sure didn't feel like it Friday night. I haven't told any of the family about me, I'll do that as soon as we know the next steps with my husband and that settles down a bit. Thanks for being there.

 

Hugs,

Cheri

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Hi, Cheri. Glad you are feeling a bit better today. There will be lots of ups and downs, I'm sure, but the important thing for you both is to stick by each other in whatever ways it can. Hang in there, sweetie.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Cheri,

 

You and your husband are in my thoughts. Healing vibes heading your way!

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Cheri,

 

I, too, am a private person who is also the "strong" one. Obviously others expect us to be there for them and can't imagine we might need them because we never tell them we do! I'm glad to read that you do intend to tell your family about your condition.

 

My heart goes out to you and your husband as you go through this. Keep talking to each other....won't help either of you to clam up because you don't want to worry each other. Might also help you feel closer.

 

Thanks for letting us know about this so we can be here for you.

 

xoxo emmie

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Hi Everybody,

 

Thanks - today is a hard day. My husband continues to lose weight - it's really noticable. He says he feels okay - he always tries to be the strong one and doesn't really want to talk about it. So, I'm trying really hard to put on a happy face. I think the hardest thing is the constant guessing. Anyway, Wednesday we go to my husband's oncologist and on one hand I can't wait because I want him to be fixed and on the other, I'm really scared. I've gone from reading everything about Scleroderma to now reading everything about CLL. One thing I have found, is this site is really unique! Before Slero, I had never really had any interest in chat lines or anything of that sort. But, after experiencing this site, I thought maybe there would be something like this for my husband. But, there doesn't seem to be anything even close to a site like this for CLL. I just want to say I really appreciate how caring you all are. I sure hope someday I can give somebody as much comfort as you have all given me.

 

Lots of Warm Hugs,

 

Cheri

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