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Trying2Bcalm's Message Board Messages

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RE: Surviving Christmas?

by Trying2Bcalm - December 19 at 5:37 AM

I'm so glad that I found this post and the posts that replied to you.  My husband died Sept 29 of this year.  I just finished putting my tree up because our 18 year old daughter came home from college for the holiday - I didn't want her to be disappointed in me for not decorating.  My heart isn't into it.  I have not baked the first cookie - or even made a meal plan.  After reading what you ladies have written, it has somehow eased my pain.  Knowing that other are going thru the same things, almost makes me feel like I'm getting back to normal.  I don't like this normal - but it is what it is right now.  I missed him being here to bring the tree in - I missed our petty disagreements as to what color lights to put on - how to trim the tree...LOL  silly things that made me chuckle and cry.  I have decided to not be here for xmas eve or xmas day - meeting my daughters at my sisters home 60 miles away and spending it there.  We all have to make some command decisions to suit what will be best for us right now to get thru this season.  I haven't shopped - I'll write checks this year for the first time in 32 years for the children.  My wish for you ladies going through this along with myself for the 1st time is to just do whatever is going to get you thru the days-hopefully with family to help us thru.  This is going to be just the beginning of many 'firsts' for the year - so lets hang in and hang on - they are still with us in our hearts and we are their eyes. Let Go and Let God - he will get us thru.  Sisters in Christ - Merry Christmas and lets celebrate the birth of Jesus.

Mhensley

All I can say to you is to BREATHE.....you MUST take care of yourself.  If you don't you will not be able to take care of your husband.  My doctor put me on some meds.....so that I could sleep and so that I could interact with the doctors and other people....otherwise I was crying or like you have anxiety attacks.  It was 2 years ago today that we were told of my husbands tumor in his brain.  He's been gone 2 months now.  Is he bed ridden yet?  What did the doctors tell you??  Fortunately my husband had no pain....if you want to talk on the phone I will be glad to give you my phone number....I'm away on a trip for the next few days, but if you want, let me know and I will send my number in a private message.  Lifting you and your husband up in prayer.

Dear Mhensley -

I'm so sorry that you are having to go through this and for the pain your husband is having, and also for the pain you are feeling.  I can't answer your questions because my husband was never offered any of the chemo drugs.  He only had radiation to the brain and cyber knife to the brain and lung.  He was on and off of the steroids during his 22 months.  It seems like everyone's cancer is different and no solid answer - only the Great One above knows the answers. I wish I could be of some help to you.  I'm glad to read that you have a peaceful feeling - I finally found my peace the last 3 months of his life, taking care of him.  He had to totally rely on me, and I was blessed to be able to do it.  Your family will be in my prayers. May God bless you and your family. 

oh...i just saw the rest of your post.  So he did have the tumor removed....what are they suggesting happens next?  whole brain radiation??

Tina...I'm so very sorry about your husband diagnosis.  In a week it would have been 2 years ago that my husband was diagnosed...my heart goes out to you girl.  This is not an easy road to travel.  Please feel free to contact me at any time on here...sometimes it may be a few days in between my checking email...but I will respond to you.  Has your husband had surgery to remove the tumor yet?  Lifting you and your husband up in prayer.

Just posting to tell all of you that follow this post.....my husband lost his battle a week ago today.  He went peacefully enough...IF there can be a peaceful death to this horrid disease.  Hospice had been coming for a month.  I never had to give him the Morphine or the liquid Ativan.  My heart is broken but I know that he is in a better place now.  He was cremated and yesterday was his memorial...a celebration of his life.  I'm not celebrating.  I'm rehashing the last 22 months - I'm angry - I'm angry at all the false hopes that the doctors seem to hand out like candy. I will get through this with my faith, my family and my friends, but I will never trust what a doctor says that is treating me or my children.  The only 'honest' answer I was ever given was by the doctor who delivered my children - as an old friend he told me to call him if I had any questions about anything.  I called, we discussed - and his question to me was this "do you know how doctors die?'  I said 'well I guess not' and he told me that when a doctor gets  told he has a cancer that they know can't be cured, that they do nothing.  They know they will die from it and stop working and enjoy what time they have left. That when a patient signs up for a trial - the clinic is given ALOT of money to sign up a patient.  Is it worth it to the patient?  He thought not.  Let him live out his life in peace and not running up and down the interstate for blood work and tests.  I am ranting and I will stop now.  Thank you to all who have posted on this - I have read them all...searching for information.  God Bless all of you that are on this nightmare of a journey. My hope is that a miracle may happen for you or your loved one.

Yes steroids are terrible drugs - but they can also help.  I'm so sorry about your husbands diagnosis, it is heart wrenching.  Sounds like my husband...kept working, kept staying busy.  He was able to stay off of steroids for about 6 months last year, but then the places where he had cyber-knife in his brain had started necrosis which put pressure on the brain again - so he has been on them since February this year.  Hospice is in our home now and helping me with his care.  Very sad at times - but other days are joyful.  Take good care of yourself during this journey - you will need your strength.  Your family are in my prayers.

I'm so very sorry about your husband....prayers lifted up for you and your family.  I understand what you mean about the oncologist....I think it is hard for them too.  Ours offered my husband a trial....and when he couldn't qualify my husband just decided he wanted no more appts or road trips to the Dr's office and be at home with his family here.  There is nothing to do - still taking steroids and Hospice has been called in.  We take it a hour at a time and he is very peaceful.

Things have started changing quickly now - since I have posted he has had cyber knife to a spot on the lung and a biopsy on one of the three spots on his liver.  He had a colonoscopy because something lit up there on the PET scan....but the colon was clean - so it has to be on the outside of it.  He was put back on steroids back in February and has been at 8 mgs now for about 4 months....he has difficulty speaking words and his throat sounds raw but isn't sore.  Some swelling around his ankles - they have offered him a  first phase of a clinical trial  -- need a brain scan before he can get started on that to make sure there are no new tumors in the brain.  It has been 20 months since diagnosis.....and we have been blessed beyond what we deserved with 2 new grandchildren, a high school graduate, a college graduate and have been closer than ever in our 33 years of marriage.  I don't get on here very often, but read all messages when I do.  You all have been so very helpful and informative.  I'm sorry for the new ones that have had to find their way to this board.  God bless all of you. :)

On Mar 06, 2013 12:28 AM Faith4him wrote:

My husband also has stage 4 melanoma, started in a mole . Progressed to lymph nodes, moved on to bones, and liver, today we found our he has multiple tumors in brain. Starting radiation in tremador this week. I needs some hope. I'm numb. Has anyone else had these procedures and had tumor shrinkage?

So sorry to hear about your husband.  So far we have not had to deal with any lesions on the bone.  Fifteen months ago my husband went thru whole brain radiation after surgery to remove a tumor.  Then had cyber knife on two other lesions that showed up on original scan.  He did fine for about 6 months...then two more brain lesions and one on the lung.  He did cyber knife again - for the brain and lung.  About 3 weeks ago he started having stroke like symptoms - he had hard time talking and could not write his name...I got him to the hospital. The cause of the symptoms were from one of the original lesions that were cyberknifed - now is on steroids again to lessen the swelling.  This is something that we have had to deal with daily since the beginning.  the cyber knife does kill off the cells of the tumors but also have the chance of turning into necrosis.....no one told me what the necrosis would do - or maybe they did and I was to busy hoping that the cyber knife would save him.  At this point the streroids is all they can offer him except for surgery to release the pressure in the brain.  All through this he has had no headaches or other symptoms of brain tumors.  The only symptoms he does have are from the side effects of the steroids - hoarsness of the throat and weakness in his legs.  Hang in there girl - lots of good days and some bad days but everyday is a good day in some way.  Please let me know how your husband is doing.

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About Trying2Bcalm

Caregiver
Melanoma, Ovarian Cancer, Pancreatic Cancer
Alternative Treatments, Cancer Nutrition, Cancer Treatments, Clinical Trials and Research, Diet, Radiation

Wife to a Metastatic Melanoma patient with Mets to the Brain. Diagnosed Dec. 2011.
Was caregiver for my mother who passed away from pancreatic cancer in 2003. She was a 22 year survivor of Ovarian Cancer.

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