No good news today

[JAGGYONE]

Hi,
I hope everyone is feeling good today. Spring has finally arrived. The flowers are blooming, the birds are singing and I’m crying my heart out.
My husband just had another bone marrow biopsy today (his last one was 2 weeks ago) and after that we had a meeting with his doctor. Although she’s not commiting to her prognosis until she sees the results of this test, her feelings are not good. The last bone marrow test showed that he now has 7% of his own cells back. If it stays around that number, she is going to ask for a boost from his donor. If it goes up that means his MDS is back and, at that point, there is nothing more than can be done. Anything he takes to alleviate one symptom causes two others to get worse. They just took him off his daily Foscarnet infusions because it was bringing his electolytes down to critically low levels. Now, we’re sure that his HSV will get worse.
The BMT was supposed to make him better. He promised that we’d grow old together and now that won’t happen. We won’t get to take our Grandson to Disney World or to a Yankee game. It’s not fair. I’m so full of mixed emotions today.
I hope this isn’t sounding like it’s about me because I certainly don’t mean it to. It’s supposed to be about us – him and me together.
I know so many of you are going through things that are similar or worse now but thanks for allowing me a place to vent. Thanks for letting me get my thoughts and feelings out and thanks for being so supportive even though you’re dealing with your own pain and heartache.
I’m not a religious person but I will pray for each one of you (just in case somebody really is listening).
Stay strong my new friends…
Judy

[patti]

Dear Judy,

I am sorry for the struggles that you are going through right now. I can’t imagine what it would be like to lose a spouse. Even thinking about it sends chills through me. You are free here to express yourself however you need to. How many of us would go nuts if we couldn’t vent our frustrations and sadness here where everyone understands? I don’t have any great words of wisdom. I’m sorry. Feel free to vent as you need to to get through the days right now.

Patti

[Ensnee]

Judy, I do know exactly how you are feeling. It’s just a terrible, terrible thing. I’m like you, not religious, but I have come to realize during the last couple of years that “prayer” is nothing less than true spiritual supposrt, whatever form it takes, or whatever you call it.

So, I’m praying for you and your husband, and family.

many hugs,
Esme

[Jimbob]

Judy, I am constantly amazed by the strength that various caregivers demonstrate. IT is hard on the patient but I believe it is even harder on the caregivers, especially if the spouse. Even with all you and yours have gone thru, you and others like you are able to offer so much to others who are having a difficult time.
I am so sorry that you and your husband are having such horrible experiences but I thank God for what you are doing is spite of, if not becasue of it.
I pray that your husband will improve and you will be able to have the pleasant experiences that youu had hoped for.

A well-known speaker started off his seminar by holding up a $20.00 bill. In the room of 200, he asked, “Who would like this $20 bill?”

Hands started going up.

He said, “I am going to give this $20 to one of you but first, let me do this.

He proceeded to crumple up the $20 dollar bill. He then asked, “Who still wants it?”

Still the hands were up in the air.

Well, he replied, “What if I do this?”

And he dropped it on the ground and started to grind it into the floor with his shoe.

He picked it up, now crumpled and dirty. “Now, who still wants it?”

Still the hands went into the air.

My friends, we have all learned a very valuable lesson.

No matter what I did to the money, you still wanted it because it did not decrease in value. It was still worth $20.

Many times in our lives,we are dropped, crumpled, and ground into the dirt by the decisions we make and the circumstances that come our way.

We feel as though we are worthless.

But no matter what has happened or what will happen, you will never lose your value.

Dirty or clean, crumpled or finely creased, you are still priceless to those who DO LOVE you.

The worth of our lives comes not in what we do or who we know, but by WHO WE ARE.

“You are special- Don’t EVER forget it.”

If you do not pass this on, you may never know the lives it touches, the hurting hearts it speaks to, or the hope that it can bring.

Count your blessings, not your problems.

And remember: amateurs built the ark . . . professionals built the Titanic.

If God brings you to it – He will bring you through it.

Even though I do try to keep up with what is being posted in this forum, I have not posted much because I have been having a little trouble posting. My fingers and even my brain don’t seem to work the way they should at times. I had had not meant to include the above portion but had it saved and it accidently got include as I was adding the post. It may not quite belong here but it is still useful so I will leave it.

[Terri]

Jimbob Thank you for the thoughts. Judy Hang in there, Know you and your husband are in our thoughts and prayers.
I have days that I just feel like it is hopeless but then i look at Bob who is going through this and I realize I have to be strong for him even though it is hard. He doesn’t let on his thoughts and fears but every once and a while he will let on how scared he is afraid he will not make it either to see our grandson grow up or The twins my daughter is expecting. that hurts me so. I try to be strong and upbeat to keep his mind on something else but I know it is always there.
You are not alone.
Peace

[Jack_dup1]

Judy,
Is is quite normal to feel the way you do and this is certainly the place to express it.
As patients it is hard for us to share some feelings with our loved ones. There is a lot of guilt that comes with the disease. I’m not good with words and I could never tell my wife how guilty I feel about not being there for her in the future. Sometimes I look at her when she is doing routine things and it tears me up to imagine her alone and the sadness I will put her through. We never talk about it, it is just to difficult, I can share it with strangers, but not with the one I cherish above all else. Sorry to be so serious, I usually try to laugh this stuff off.
Jack

[Ensnee]

Jack, what you wrote makes me think that Hans was probably going through that same thought process in the last couple of months of his life, about me. I would feel so bad when I would start crying around him, because I didn’t want to burden him with my fear & sorrow. Perhaps you could write your wife a letter to let her know how you feel. I don’t think Hans would ever have been able to verbalize those feelings to me, out loud, and it would have been very difficult for me to hear him say them, also. But they are precious words….I must say, I wish you continued good health in spite of the monster!

Esme

[Jack_dup1]

Esme,
Thank you, I wasn’t trying to make this about me, I thought if I explain how I feel, it may help other spouses to understand how we as patients feel.
Jack

[Ensnee]

Jack, you did accomplish that. Your words have so much feeling to them — and they helped me a lot.

Esme

[JAGGYONE]

Jack,
I, too, thank you for those words. I spend a lot of time thinking about life without my husband.
I listen whenever he wants to talk but never really thought about the things he doesn’t say. I know that he’s more afraid about leaving me alone than he is about dying.
I came to this forum as a caregiver, looking for some support and understanding for myself. I have since gotten that and, thanks to people like you, more insight than I ever expected.
You are truly an inspiration.

Judy

[CAR]

Judy

I totally understand where you are coming from in your posts. Keep the feelings flowing. We all understand and care about you and your hubby. It isn’t fair, it just is. None of us want this disease and I’m mad as hector that so little is known about it. I don’t see anything on TV about it. In fact until my mother was diagnosed about a year ago, I had never heard of it. My mother is terminal now with acute lukemia and my husband has the beginning stages: MDS-RA with no chromosomal abnormalities. I think somebody better wake up and realize that this disease is much more prevalent then anyone ever realized.

Chris

[Author]

Posts