Monday, March 24, 2008

Powerless

It was a bitter-sweet Easter celebration. We had a nice Easter get together over at my in-laws. Three of my m-i-l's sisters were there with their husbands and one niece. As was my older son, his wife and daughter, my mother and us. Younger son couldn't go though because he has a bad cold and didn't dare go in that house with Deanna's immune system so compromised from battling the stupid cancer.

I love when all the relatives get together. It's rare now because everyone is off with their own families. But I have always said marrying my husband was like marrying into the Waltons because they are such a close and loving family. I learned a lot about family from them. I love my family but they seemed to put more emphasis on friends than family. They all loved each other but it's definitely a different dynamic and none of us are close. Except for my mother, the older generation has died out and we cousins love each other but just never really communicate. I wish we did and I am just as guilty of not keeping in touch.

Devan looked so cute and pretty in her Easter dress. She loved her Easter basket and gifts. I think her favorite thing is the traditional Easter egg hunt outside. She just love's that! Our older son was racing her for the eggs but of course made sure she found the most. :)

There was so much food...way more than was needed...but delicious. I baked a big lasagna and I baked a small 9x13 lasagna for our younger son since he couldn't be with us. I also made a broccoli souffle which is a total comfort food and basically a heart attack on a plate...God forbid. They ordered a tray of chicken parm and also spaghetti so they didn't have to be concerned with cooking and then there was some other food too. I don't really like ham very much...but I like my m-i-l's ham and so I did have some of that. The funny thing is that I gave her the recipe for cooking it when I first got married but I don't know what she does to it because it ALWAYS taste better than mine.

I kept going like the energizer bunny into the wee hours of the morning (thank you monavie) because I kept doing one more thing and then just one more thing. We were also celebrating my m-i-l's birthday and Deanna's birthday and so had to get their presents wrapped and do the birthday cards and Easter cards. And then I decided to just keep cleaning. I only had 4 hours sleep but it felt good getting up only having to bake the lasagna and a souffle.

However, because I was in the stores so long and on my feet seemingly forever.. now I am having knee pain. I had 2 meniscal repairs done on that knee and if I overdo it , I do find it bothers me. The MonaVie juice isn't helping with that. I thought it was at first but now I am not so sure. Although this is the original formula. I know the Happy Hospitalist is drinking the active formula which contains the liquid glucosamine and some other ingredients that helps joints. He says his shoulder pain has stopped while drinking the juice.

I am optimistic about the other things the juice is doing though...and energy is one of them.

Our aunt is so thin... seems like nothing to her. She had a really hard time getting out of the chair to stand up and everyone is afraid to help her up because she is sore where the mastectomy was. Is that normal... because that was done a year ago? She looked like she was struggling to focus on what people were doing/saying. I kind of think she is in pain but not letting on.

Yet everyone must know she isn't looking good. It's like everyone does this dance of silent denial around the sick person because no one, including myself seems to acknowledge her increasing frailty. Last night I picked out a pretty Easter card that said some things that perfectly described her and it also played Amazing Grace when it was opened. But then today my husband said don't give it to her and I said, "Why...because they sing it at funerals?", to which he answered yes. I did have that thought after I brought it home but quickly dismissed it because it is a pretty song. So, I pretended that I forgot it but we will get her another card tomorrow. Maybe that was silly to do, but yet another part of the dance of denial.

I recently said in another blog that I have questions about her condition but I don't want to give power to my words. She had to go lie down twice. She seems very weak. They found lesions on her brain and so started radiation a couple of weeks ago. She gets a break tomorrow. It's in her liver but not worse or better. I have to admit, I was privately thinking about quality vs quantity of life today. Yet...she was feeling awful and seemed weak prior to them discovering the brain lesions and so after two days of radiation she seemed to rally back and walk better, etc., but my husband said today he didn't realize she was that bad from when he saw her last week. I know radiation can make you tired and I hope that was it. It seemed as though just speaking was an effort for her and she was quiet today.

And today she told me she feels bad that everyone is worrying about her. My mother-in-law lives with her and is bearing the brunt of it and she will be 78 next week. Today our aunt told me that she wants to live and she hopes and prays that she does but if not then that's the way it is. It was the way she looked and sounded when she said the "but if not"...like she is doubting.

You know...I always seem to have words, suggestions and hope for others and now ...I feel so useless and powerless around her that I might as well be a puddle of melted jello around her because I don't feel I am helping her with anything I say and I love her so much. I don't even know what to say. I don't know what to do. I empathetically listened while she said the few things she said to me. I can ALWAYS think of something...but not now. I offered to come over and help or take them anywhere because I certainly have the time since I am not working but she said no that they have everything taken care of. I made a big pot of homemade chicken soup a while back but they don't go through much food and really just kind of do their own thing. I did dry and fold their stuff because their dryer went on the fritz. They never want to bother anyone. And they are very stoic. The never complain. I still can't believe she went home the same day she had a radical mastectomy! Even today, she tried to smile although I could see it wasn't easy for her. I wrote this back when it all started. I just want to see her get that radiant smile back and for her to be back to doing the things she used to do.

You know...we all think we have forever sometimes... but we don't. When I was younger, I took family for granted. I used to balk at going to family reunions sometimes because I wanted to do my own thing and now...now I wish I had the many relatives that have since passed on- with us. It is so true that we should appreciate the time we have before us right now and be savoring the moments.

I welcome anyone reading this who feel so inclined, to pray for or send good thoughts toward Deanna and family. Thank you. :)

5 comments:

Elaine said...

..and a very belated Happy Easter to you, Seaspray.

I am really stuck for words but I wish so much I could bring you some comfort about your aunt. If she finds it easier to cope with things through denial, then that is probably her call. It's the elephant in the room thing again, isn't it?

If she doesn't want to be a burden and prefers to listen to what is going on round about her without taking an active part, than that could very well be a great comfort to her.

I remember my very good friend being in a hospice ward shortly before he died. He knew he was dying and could say very little but all his family and friends talked and laughed about the good times we had had with him. You could sometimes see a small smile cross his face.

I think I am saying that she should be allowed to do as much or as little as she wants/is able. That talk round about her doesn't need to force her to take part for her to get benefit from it.

My best thoughts are with you at what must be a very difficult time.

SeaSpray said...

Elaine, thank you so very much for your comments. It's just difficult for everyone...most of all Deanna.

Oh I don't know that she is in denial but rather it is all of us who try to act like everything is ok when it it isn't.

Then again...what are we to do? you can't just start discussing your personal fears with her. Or maybe one on one...it would open up dialog, taking cues from her if she wanted to discuss certain things.

I don't at all think she should or shouldn't do anything in any particular way. She needs to do whatever works for her.

I just noticed for the first time that she was different and seemed to be struggling to focus and be polite. And so I interpreted that to mean that she must be in pain or feeling badly and the weakness was evident. I felt powerless with my ineptitude to communicate or help her feel better even when I was one on one in her bedroom later.

And also I hate the awkwardness of how silent everyone is about the elephant in the room...but it is what it is.

During one of my death and dying classes my instructor had said that often the person KNOWS they are dying and wants to talk about it but the people surrounding them don't let them. An Easter celebration isn't the place for that of course and that would be a more one on one conversation and only if it seemed appropriate. Everyone has their own way of handling things. Both she and my m-i-l are extremely stoic women and so even if they desperately needed to talk...it is not likely they would. They simply do not want to burden other people.

It is so very different when you have the deeper emotional connection with a family member vs a patient. And even though you get to know and care about a patient...it is still different.

I know what you mean about everyone talking and laughing around the pt and I think that is good too.

Even though I was heartbroken...I had a good closure with my uncle Jim when he was dying. My cousins had their father set up with hospice care in their home.

My mother and I got up there just in time because the next day he could no longer communicate. We stayed for 2 nights and left on the third day.

The night we got there, I was able to spend some quality one on one time with him with me doing most of the talking. But he managed to say some things and even with one word made a joke interference to what my cousin and I were discussing.

It was surreal how over the next couple of days every time the doorbell rang, the dogs would noisily go running to the door with their toenails clattering on the hardwood floors and barking to announce each new visitor. We all would be laughing heartily in the kitchen recounting old family stories or at current ones. And we alternately take turns to sit with him.

The irony didn't escape me that someone was dying in the next room and yet we were all laughing.

My uncle Jim loved life and had a great sense of humor. I know he enjoyed hearing it even though he could no longer communicate. By the next day he had become septic.

He told me that the most important thing a parent could hope for is that their children turn out alright. I agreed with him. He spoke volumes with that statement.

Deanna is loved very much and is surrounded by people that love her.

There is no way around it...it just hurts on many levels for many reasons and it goes both ways for the patient and loved ones.

I am grateful for the closure I had with my uncle Jim.

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Chrysalis Angel said...

I'm sorry for all your family is going through. I still have pain from my surgery and hers was much more involved. Mine was years ago. It sounds normal for all she's going through and her age. You know her doctors will be watching her.

There are no words sweet Seaspray. Just love her and let her be in your aura and just feel your warmth. Words aren't always needed. She knows this is bad. She's fully aware you all feel the elephant in the room. She would just want you to all be yourselves and let her rest when she needs to, and let her be with you when she can. Some do want to talk about it and others do not. She'll let you know. You just be your sweet self for her. Make sure she's comfortable and able to be out of the way, but with you, where she can watch the people she loves.

SeaSpray said...

Thank you Chrysalis Angel -Words of wisdom for sure.

Both you and Elaine have said some good things here.

I do know this...it's just that the powerless feeling is overwhelming and nothing seems right and i feel "off" with my responses or lack of. But it's not right, it's all wrong and out of kilter.

I have been quiet and I wonder if she's noticed because she has always known me to be a bubbly, effervescent person.

It's hard to feel normal with an elephant in the room. I give the oncology professionals a lot of credit. I also think the degree of closeness is a factor too because you feel more.

I am hoping the radiation was tiring her. They told her she'd be tired but she's had it before unless it is because it is directed on the head.

I also didn't realize one could have surgical pain so long after surgery. That's a relief because I thought that meant the cancer was back in her axillary/breast region.