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An update on Bill


SBeth

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I've been getting a few PMs about Bill and how we are doing since Tracy's wedding; so I thought I'd post an update. Let me just apologize upfront for two things...

1. this will likely be a book as I really just am looking to vent, and

2. this may be hard for some people to read, so if you are having a good day, or don't feel like you want to be slapped in the face with my reality these days...please stop here...and again...I'm sorry!

We've been to the ER several times since the wedding due to a severe and swift onset of shortness of breath. I cannot tell you all, nor do I probably have to, how frightening that can be. I feel so helpless and he gets so very nervous when it happens. We go to the ER, his oxygen levels are okay but they give him oxygen anyway. It's always the same thing....they access his port, they draw blood, bloodwork comes back positive for a potential blood clot (false positive because of previous chemo) and they order a CT scan. We are there for six hours or so...he misses his scheduled pain medication...we wait and wait and wait for the ER nurses to finally give him something because I'm not allowed to give him his meds while he is there...the scans come back showing no blood clot and we go home. Rerun...do again in a few days. I'm exhausted...so is he. We came home in the middle of the night Friday and I asked him if he wanted one of his sleeping pills to help him sleep; he (joking) said "How about giving me the whole bottle?". I didn't know what to say to him. He wasn't serious...was he? He's tired of not being able to breath, he's tired of the constant hot/cold sweats/flashes, he's tired of being sick to his stomach, he's tired of being constipated, he's tired of having diarrhea, he's tired of pain. He's just tired of everything. He's never been this person before. He's always been a very easygoing, never get his feathers ruffled, upbeat and happy person. Lung cancer has taken that from us.

We had his oncology appointment yesterday and the results from the CT scans from the ER where there and we knew since Friday night that we were going to be getting some results we did not want. Tracy (Bill's daughter) asked if she could come with us for the appointment. It was hard for her. The doctor again told Bill that it's time to bring in Hospice. The scans show that while the bone mets in the rib-cage remain stable...we have a new nodule on the lung and a possible new cervical spine met in addition to the adrenal met. The Alimta did not help and it wasn't tolerated well...so there is nothing left to be offered.

We have not called Hospice, although I did get a Rx for oxygen and we now have it in the house for him and it seems to give him a sense of security and so he seems to rest better. We have told the boys. Our 15 year old knew, our 11 year old had a very hard time. They have known all along that he has lung cancer and in all the months of taking care of Bill and working and trying to maintain some normalcy in our home...we failed to recognize that our youngest thought he was "cured". What a failure I feel like...how could I not know what he was thinking? Woe is me, poor me, no time to feel sorry for myself or beat myself up...my husband is dying.

So...for the past week I get Bill his meds at night and try to time it so that I get in one last "I love you" before he goes under the spell and then I lie awake all night long and listen to the inhale...wait a few moments...listen for the exhale. Some nights I could swear 10 to 15 minutes have gone by without the exhale...some nights I could swear I can feel his hand grow cold under mine. I feel my heart start to pound, my throat gets dry (like it is right now) and I start to shake...is it over? No...exhale...rerun....do it again.

We have no idea how long this can go on. I asked him yesterday if there is ANYTHING at all he wants to do, anywhere he wants to go, anything he wants to eat, say, write, see...anything? I'm desperate to accomodate his any wish. He tells me there is nothing, he's done it all and we've said it all. The only thing left is he wants to go over (again) what the safe combination is, when the house payment is due, where the water shut-off is, when the oil gets changed in the cars...just all the stuff he worries about me knowing...we'll do that...again.

I'm trying to be strong. He says he cannot leave me until he knows I will be okay...then, he cannot leave me...right? I'll be strong for him. He tells me he wants me to be happy again. I tell him I will be happy again...never as happy...but I will find a new happy. I get so much hope from so many of you here. I know that I will put one foot in front of the other, take care of the boys and be here for Bill's daughters and I will get thru it. It will be hard and some days I will not think I can do it...but I will...right?

Right now I'm just spending as much time as I can with him. We don't have much to say to each other...nothing new anyway...just alot of hugs, kisses and looking at each other.

Thank you all so much for all the prayers. We feel them.

Love,

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Beth,

I'm so sorry that you and your family are going through this terrible nightmare. It must be so hard for you to hold it all together Mom, Wife, Caregiver. All the symptoms Bill is experiencing are listed in the hospice book a friend of mine gave me. Please try to encourage him to sign up for hospice. They are a wonderful support for the family and the patient. I also wanted to reccommend the book "Final Gifts". It is by two hospice nurses and is very comforting. I will pray for your family.

Denise

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oh, sweetheart. I wish I could give you a huge hug -both of you. my arms hurt from wanting it but you're so far.

Beth, we all know here how hard Bill has fought and what a valient soldier you've been for him. there is not one ounce of doubt in my being that you showed up for him 100%. you two are a beautiful portrait of love. period. please don't call yourself a failure - your poor son probably believed his heart's desire, despite what was going on around him. who can blame him? the poor guy.

you're in my heart and my prayers. I can only begin to imagine what these nights are like for you. my words are so small in the face of it. just know that you are loved by all of us here, and god. you are not alone with this.

you and your whole beautiful family are in my daily prayers, Beth.

xoxo

amie

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Oh Beth, my heart is breaking for you as I read your post. All of your words, spoken so beautifully, take me back three years ago in my own life. I can remember those nights of waiting for breaths and thinking that limbs felt a little too cool. I can also remember lying awake most of the night, staring at his face, hoping that I will be able to etch every detail of his face in my mind for eternity. I am saying lots of prayers...for you, Bill and yur family. When I read posts like yours and remember how cancer destroys families and shatters dreams....I get so angry that something can't be done to slay this monster!!!

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Oh Beth, I wish I could just come sit and cry with you. I'm so sorry you are here. I'm sorry there is so much.

I remember what it was like with Mom waiting for the next breath... I slept a night or two in her room to spell Dad out, and I didn't sleep at all becasue all I could do was listen for that next breath. It's miserable and heart-wrenching.

You are an amazing, beautiful, wonderful wife and mother. Your son will process this somehow, and I have no doubt that you will help him. I wonder if he knew, but didn't want to know? Kids have that amazing resilience and belief, you know? You and the kids will pull together and you will get through this.

Hospice really might help. They could assist you right there instead of you having to do those horrible ER trips. But I know how hard it is to submit to the h-word.

We're here hurting with you and standing with you, loving and praying for you both. Know that.

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We love you, Beth.

We love you, Bill.

We ache for the boys and Bill's daughters.

We ache because we are not physically there with you or at least available to you.

We care and are so very touched and blessed by your love for your husband and by your gift of yourself to us in the middle of your pain.

Please feel our love and support.

Brian and Pat

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Beth~

Please call hospice. Hospice is not just for Bill, it is for the family too. Hospice likes to get involved and meet the patient early-- not come in at the last minute. Please don't wait.

You know we often speak of our new normal and we forget that the kids adjust to that new normal and they think all is well. I had to speak to my son not too long ago and explain that his dad still had cancer-- and he's 18.

I am so sorry for all you are going through. I wish I was more help.

Rochelle

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Beth, it was a hard post to read, but thank you. I think Ken and I are getting close to where you are. I guess all our husbands want to keep looking out for us. What wonderful guys! It is just so sad and scary and it really does hurt. Please take care of both of you and I will keep sending prayers.

Karen H

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((((Beth))))

I hope you can take comfort in knowing that you have been the kind of wife/caregiver that someone can look at and say that everything important has already been said. While this is a horribly sad "story", it is also a beautiful love story. The love you have for each other, and for the kids, is so easy to "see" through your words.

You are in my prayers. Take care of your self.

:) Kelly

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Beth, I feel so close to you as you describe such heart-wrenching emotions for this saddest time in your and Bill's lives. I know I can't say anything to take the pain away, but know that I am thinking of you two and have such admiration for the beautiful way you continue to love each other.

Like Ann, this takes me back to earlier this year with Jim. I, too, remember listening to breathing and looking at his chest to make sure it was rising and falling. Sometimes I had to put my hand on his body to make sure. Bill and Jim had something in common, as do a lot of our husbands here. Bill wants to make sure you know how to do all of the "practical" things in life (oil changing, paying bills). At the latter stages of Jim's ongoing treatments, he would ask if I understood that each treatment was just buying him a month or two (those were his feelings) but that he needed to just get some feel-good days so he could finish my bathroom remodel that he was doing for me and a few other odds/ends. Like you, I only wanted him to stay here, not the new light fixture.

These moments are treasures for you and Bill and I am so glad you are getting talk time in between pills and caretaking. Yes, you will get through this. Tears and smiles will help you down the path.

I'm here for you. Take care of yourself and Bill and let others (including us) take care of you too.

Lynne

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Dear Beth,

I read your post right after I got to work this morning and all I could do was shut down and leave the office. Even though I knew from our talks that this was coming, your post still wiped me off my feet, and, in fact, it is still difficult for me to type my words, as I know it was for you to type yours.

I can pretty much ditto Ann's exact words. Your words bring back so many memories, so many worries, fears and sleepless nights. While it is painful to hear these words, it is important for all of us to hear them and understand the depth of your fears and your sorrow. I know how hard it was for you to write this out, and I know how much it hurts.

I hope more than anything that you will receive the same feelings of love and understanding that I did and still do from our friends here. Even though that love and caring from everyone here won't help one bit to take away your pain, it did help me so much to know that others were sharing my pain and loving me and holding me through it, and that they still do.

Hang in there, girlfriend. Please know that my heart and my prayers are with you.

Love,

Peggy

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Dear ((((Beth)))),

I have left this post 3 times and returned to attempt a reply.

My heart goes out so much to you. I cannot begin to imagine the twists and turns this journey has taken.

What is most apparent is the deep love you and Bill share. Now that I can relate to. And that is what makes this disease such a heartbreaking one.

I have no words of courage for you. Really I don't know if there are any words that would be of comfort right now. But hoping that by knowing of all the love and support you are getting via cyberspace you will be able to face yet another day.

There is always hope...but know you are not seeing it. There is always faith...though sometimes it is difficult to keep it alive. And there is always love. There is no question or end to that.

So Beth, I offer my hope, my faith, and my love in support of you and Bill. I also pray that your heart will not hurt so much. That prayer will be a difficult one to have answered, I know.

You are stronger than you may think. You have my utmost admiration for how you have traveled this journey. May you find comfort and peace in these days with Bill.

Love,

Kasey

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