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I am bumming...


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Hello everyone. I have been reading your posts like crazy, but when Dave passed, I could not post anything more than an I'm sorry. I hate cancer.

As for mom, her brain is shot! I keep hoping it is the effects of the WBR and radiosurgery, but man. We went to a festival over the weekend and she went to get something to drink and was lost, I swear she was. Also, she has been having small seizures more and more. I am back to work, hardly ever there for her to help out. Her back pain is being managed with morpheine and oxycodone, but her memory and ability to figure things out is diminishing. I used to be so sure she would be cured, but I am at the point to where I would just rather we talk about what is to come..what her wishes are since she can't donate her organs, etc. (She told me in passing the other day to just donate her organs IF she ever dies). I can't even approach it with her unless she opens up the gates to talk REALLY TALK about it. Her and my stepdad still yell at each other and argue as if they have all the time in the world to make up for the hurt.

She has the follow-up MRI on August 5th from the radiosurgery and we shall see what the Dr. has to say. If this is the result of a successful radiosurgery, forget it!

I was at a friend's house this weekend who works at on oncologist office and she went on and on about how if she were ever diagnosed with cancer, she would NEVER take chemo or get treatment bc you just end up prolonging the pain and end result.

I apologize for venting, but I know I can here. I will say that I do realize how lucky I am to have had this time with mom, it is much better than not knowing your hubby would die unexpectantly within an hour after speaking with him at lunch.

Somebody slap me..

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Hi Lori,

I hear your pain, anger and fear loud and clear!

My husband was recently having brain problems like you describe. We learned from an MRI that his old brain tumors (that had already been WBR'd and SRS'd previously) were growing again. They gave him Decadron for the brain swelling and most of his symptoms disappeared. The tumors had grown significantly, though, and still had to be re-treated.

He just had SRS again to three of the same tumors plus to two new very small ones. It really scares me. It's just a lot of radiation to the brain. The alternative, however (to let them grow without treatment), was a worse choice. Sometimes we just have to take our chances.

I can't remember. Is she taking steroids (Decadron)? If not, that might help her symptoms a lot.

I know you are terribly upset that she's having these problems. And, I hate cancer, too!

Love and hugs,

Peggy

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I haven't experienced what you're going through with your mom, but it sounds so scary. I'm so sorry.

I find it hard to hear people's opinions sometimes about what they "would" do, I just don't think you know until you're there. my mom SWORE she wouldn't have the surgery she just had, right up until that biopsy came back. I have no idea what decisions I would make, if I were in her shoes.

at any rate, I can only offer support. hang in there, and I hope things improve for your mom.

xoxo

amie

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Vent away! You needed that. As for "I'll never have chemo", those kind of declarations are made without experience or knowledge or having to really face the decision. I always said I would never let a surgeon cut me open. When I had my heart attack 7 1/2 years ago and was faced with bypass surgery or death, I opted for the surgery. I have never regretted it. Never say never. Don

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Dear Lori,

What Don said makes so much sense... nobody knows until faced with the situation themselfs, so she was talking out of her hat.

I also know what you mean about your step Dad and Mom fighting as if there was all the time in the world to soften the hurt. My Brother and his wife did this also. He left her several times but she begged him to come back and even though he was stage 4 cancer she treated him like he was an enemy at times and it hurt so much to watch. It will be your step Dad that will have to live with the guilt for things said if your Mom is to pass away.

I understand your hurt, frustration and anger only to well.

Add me to being someone that HATES CANCER too!!!!!

God Bless you and Yours,

Jane

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Hi Lori

We are going through a similar thing with our Mum at the moment. Cognitive functioning can be affected by so many different variables, especially in a person with cancer. The doctors have not been able to determine yet just what is causing Mum's confusion/delerium.

I know how hard it is to watch this happening....know that I am thinking of you and hoping things improve.

Karen

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:x I HATE CANCER TOO :!::!: DON'T LISTEN TO WHAT IF'S -AS PEOPLE TELL YOU WHAT THEY WOULD DO--THEY HAVEN'T WORN THE CANCER SHOES--SO IT'S TOO EASY TO SAY "I WOULD DO THIS OR THAT". EVERYBODY HANDLES THINGS IN DIFFERENT WAYS. YOU HANG IN THERE. GOD BLESS,NANCY C
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I am not in your position but I think I can (lately)understand a very little of what you feel. As far as your Mum and step-dad arguing well, if it makes them feel "normal" then leave them to it. If you feel it's more serious than that would it possible to have a quiet word with your step-d?

I'm sorry you're having such a rough time at the moment.

Dee

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Hey guys, thanks for the support and permission to let it out. Peggy, mom has been on Tegretol (an alternative to Decradon) ever since she was diagnosed with brain mets. Her nurse is calling her Dr. on vacation to see if they should increase it and to check to see if they should increase Coumadin too, bc it is again dangerously low. You are probably all very right that no one could say they would or would not choose treatment until they are faced with death. I was talking to another friend last night and she said that my mom will bring up the talk when the time is right, but I am afraid she will wake up one morning and not know who we are..is that likely? Also, am I right that she cannot donate her organs, any organs? Thanks for your help. love, me

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((((Lori)))),

I have read this post several times and I've been trying to find something to say that would help you. I keep coming up empty, except to say that my heart is breaking for you. I can relate to some of your frustrations, but I don't have answers to them. Take care and take strength in knowing so many of us care and send you our prayers.

Love and Prayers,

Sue

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Lori,

You asked about organ donation. Maybe the topic and looking for a answer will offer an opportunity for your mom to talk about tough things. Here's a website with answers about organ donation. Apparently, the corneas of the eyes may be donated to help someone see. Second website is an article about a woman in China who died of lung cancer and donated her corneas.

http://www.livinglegacyregistry.org/learn/

http://www2.chinadaily.com.cn/english/d ... 310801.htm

Wish I could offer something else. Please take care.

Leslie

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Hi Lori,

Just want you to know that I am sending prayers to your mom.

You are a wonderful daughter. Just keep doing what you are doing, as that is so helpful to her.

I hope you moms memory gets better.

As far as what your friend said about chemo, that is just her opinion. Chemo has help a multitute of people, not just temporary but long term.

Maryanne

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(((Lori)))

I understand how you feel. I just went back for a visit this weekend and mom was having problems with confusion too. We were at a wedding shower and a game she would have never had problems understanding she just couldn't get, it was so sad to watch her struggle to try to understand. It's weird one minute she seems fine and the next she is confused. I don't know if this is from the PCI treatments or the stroke or a combination. We are praying hard that this is temporary. I will be praying for you and your mom. ((( hugs)))

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Lori,

I can't speak to the brain radiation because I've never had it, but that person who was running off at the mouth about how she'd never have treatment for cancer because it just prolongs the pain and doesn't do any good anyway absolutely makes my blood boil!!!!!

What would she know about it anyway? She has no idea what she'd do in the position that many of us here have found ourselves in. I personally feel my life was worth trying to save and I did everything I could to save my own life during my two experiences with cancer.

If caught in early stages, treatment can CURE, and if not caught in earlier stages, it can relieve pain, and prolong a painfree, productive time in a patient's life. People shouldn't say what they would or would not do faced with a devastating diagnosis until they're there.

Those people who choose to forego treatment once diagnosed, I respect. That is their decision for their circumstances. But to just be a perfectly healthy person and say they wouldn't take any treatment is just not anyone I would take with any seriousness at all because they have no idea.

Sorry to go off on this, it just hit me wrong, and to say something like that to you when you're struggling with your mom's symptoms makes me wonder what kind of friend she could possibly be.

I hope things work out for your mom...there are lots of reason for how she's acting. Could be the medication, could be a lot of things. Good luck to you and your mom.

Cindy

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Hi Lori,

Sorry to hear your mom is having such a hard time with her cognitive functions. I know it is next to impossible to do, but try not to analyze it or worry about the what if's of it. Since my husband's brain mets were discovered (15+ of them), I've looked at every little thing he does and I wonder if it is because of the cancer. If he drops something I right away think he is losing motor function from brain mets. He takes a nap and I wonder if it is cancer progressing and wearing him out. He acts like a normal man (and women, we know what that means), and right away I think again it's got to be the brain mets not just him being himself with normal issues.

I by no means wish to trivialize the problems your mother is going through, I just mean you shouldn't borrow trouble from tomorrow. Try and stay positive until you know what is really going on.

While going through WBR and even for about a couple of months following it, Keith was woozy, dizzy, Exhausted, uncoordinated, no memory at all (he'd forget things 10 minutes after we talked about it, he forgot Christmas), and strangely enough he had very graphic terrible nightmares. Taking Oxycodone and Oxycotin on top of it only made those symptoms worse. I thought for sure the radiation wasn't working because he seemed worse than when he went in. But since then his brain mets have been stable. There just is no way to know exactly what is going on, which is also why it is ok to talk to your doctor anytime anything new comes up (even if it winds up being my own paranoia). I think I have my onc on speed dial.

As far as your friend goes and speculating on what she would do... well I guess no one can predict the steps they'd make until they are called upon to dance that waltz. As a caregiver, I am so happy Keith did choose to receive treatment. Not only am I still hopeful of a cure so our future is still unknown, but the alternative to treatment doesn't have the odds I prefer. The outcome is known and it isn't one we'd choose. Besides, even if there was no hope I am so grateful for the extended time together. We were told that with treatment Keith had about 9 months, 3-6 without treatment. Well, it has been 28 months, and good ones at that which I am sure is largely in part to treatment controling the tumor growth. I treasure each one of these days and wouldn't trade them for anything. I think if I were diagnosed tomorrow with Cancer I'd have a chemo IV in my arm the very next day because not only would I like to enjoy one more day followed by the hope of another day, I also wouldn't deprive all the people I love and who love me of our time together for a few weeks/months less suffering. Bring it on! Cancer can wreck a body but it can't destroy love and can't undo spirit.

Boy, sorry to rant there a little, but as you can see this is something that struck a nerve with me.

So, I'll just add one more comment as to your question about organ donation. Talk to your mom's doctor about it. If your mom is uncomfortable asking, talk to him privately. Keith and I asked, and were told he could still donate anything that was not affected by the cancer and it turns out there is a lot of things that can be donated. We were told he has a strong heart and as long as that stays clear it could be donated, along with Corneas, Skin is also donated to help burn victims, heck they take most anything. They just can take an organ involved at any time with tumor activity or right next to tumors as some cells may be there but not noticed yet (depending on the organ and likelyhood of spread to that organ). Also, some organs that have received radiation are no longer in top shape so are not received.

Ok, I'm done now. Sorry about the novel

You and your mom are in my prayers - God Bless

Carleen

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