New Hear and Struggling

ExecDad

My wife, she is 36 and I am 39, was diagnosed with Breast Cancer in Spetember 2003. The surgery to remove her right breast and Lymph nodes revealed that 25 nodes were affected.

She went thru 16 weeks of Chemo and 8 radiation treatments, and within a week of finishing it metastisized to her brain.

The Dr. initially called me and told me she had 2-9 months to live. We are 5 days away from 7 months.

Once it went to the brain they did spinal-cranial radiation and put her on Decadron. It made her so emotional and anxious she now takes close to 4mgs of Klonopin a day.

I started drinking heavily, but stopped last week. It did help me escape, but it also made me unleash anger at unpredicatble times ar people I care about.

She has been through alot, but is doing pretty well. Up and around, just had her ovaries removed prophylactically.

I am lost. When she gets a good test result I am torn between oure elation, which then turns to fear, which then turns to wondering if I will ever have a stable future again.

How long will this go on? We will never know if she beat it, as from what they tell me there is no beating it once it is in the meninges of the brain.

Anybody have any words of wisdom. I'm just a business guy with a sick wife and 3 young kids,(9,7,5) and I am way over my head!

RebeccaJane

Hi there...your situation sounds very difficult. My husband is 28 and is down to the last 7 chemo treatments for colon cancer after his operation to have the tumour removed, he has had about 31 treatments over the past six months. I am 29 and we have a 4 year old daughter. The last six months have been hard but I am guessing nowhere near as hard as you and your family have had for the past year or so. You are doing great, you are doing all you can do.....you deserve a medal!!!! You both do...My husband has a friend who also has cancer of the brain and he is amazing and has totally defied the odds of survival. I honestly think he will live longer than us!!!! I know it must be hard to keep up and happy but just try to live for each day. Glad to hear you stopped drinking!!!! The occasional wine helps but not in excess.....as I discovered when my husband was first diagnosed!!! Take care....Rebecca

BionicKitty

My mother and I have been dealing with Mets to the brain since last Novemeber. I don't believe any of her doctors expected her to be here a year later. I know what you mean about the decadron. It makes my mom like a 3 year old on Crack, wash it down with some Jack! She just had a dead treated tumor removed last week, and has been weaned off them this week, Thank God, but she is sooo weak.. I am hoping her muscle tone comes back, because she can not get up out of a chair from the lack of muscle strength, thanks to the decadron.It was a mixed blessing I suppose.
It is difficult not knowing what the future brings. I hate the time limits, because if you surpass it, then you have no idea what goal to have except day by day.I find the most frustrating thing is not being able to enjoy the time we do have with them, because we have to deal with red tape and all the buisness of life. Bills and car insurance and funeral arrangements take precidence over looking at photo albums, carving pumpkins and sharing memories. It all becomes bodily functions and when is the next pill .....I feel like I am in a strange dream , that continues night after night, or, even better, That movie Groundhog Day!
I don't know if this helps, I just went on my own little rampage , sorry.... I understand your fears, because they are mine too.

Take care, BionicKitty

layne34

BionicKitty said:

My mother and I have been dealing with Mets to the brain since last Novemeber. I don't believe any of her doctors expected her to be here a year later. I know what you mean about the decadron. It makes my mom like a 3 year old on Crack, wash it down with some Jack! She just had a dead treated tumor removed last week, and has been weaned off them this week, Thank God, but she is sooo weak.. I am hoping her muscle tone comes back, because she can not get up out of a chair from the lack of muscle strength, thanks to the decadron.It was a mixed blessing I suppose.
It is difficult not knowing what the future brings. I hate the time limits, because if you surpass it, then you have no idea what goal to have except day by day.I find the most frustrating thing is not being able to enjoy the time we do have with them, because we have to deal with red tape and all the buisness of life. Bills and car insurance and funeral arrangements take precidence over looking at photo albums, carving pumpkins and sharing memories. It all becomes bodily functions and when is the next pill .....I feel like I am in a strange dream , that continues night after night, or, even better, That movie Groundhog Day!
I don't know if this helps, I just went on my own little rampage , sorry.... I understand your fears, because they are mine too.

Take care, BionicKitty

Day by day, that's all we can do and all we have. My husband (39) was diagnosed May '04 with stage 4 lung cancer with 4 brain mets. He then got blood clots in his legs. He is now on blood thinners, which make him more likely to have a brain bleed out. He lost over 50 pounds and looked like one of the sickest patients in our cancer clinic. I, too, dreaded every day, wondering what would come next and how much longer we would have together. Then the doctor told us chemo wasn't working and there was no reason to continue. We did get a wheel chair so I could take him out of the house. That was very important. Small outings into the world, staying with the living, not just hiding at home with our fears.

But then came our miracle. Terry was given an experimental chest tube to drain the fluid from around his lung. We didn't expect much, didn't expect the lung to reinflate or anything. The first two days they drained about a gallon of fluid. In two weeks he lost 24 pounds, basically fluid which had been displacing his organs, especailly his stomach. He had been limited to sleeping in one position. He had developed an ever worsening bedsore on his boney shoulder. The first night with the tube it became clear that he couldn't sleep in his one position. He said it would take a miracle to let him sleep that night. He rolled over to his right side, the side he couldn't breathe on the night before. Though it was slightly labored he did breathe! He did sleep. The next night was even better. He then got to where he could vary his sleeping positions. His shoulder slowly healed. His lung began to reinflate! And he began to cook and eat and eat. He was slowed down by food posioning for 5 days, he now has a ravenous appetite. He enjoys cooking for himself and for me. This week the tube was removed, the fluid is gone! His hair has slowly begun to grow back. His doctor, who was some what pesimistic actually said, "I guarantee you'll have more hair than me by next Christmas." Next Christmas! In the beginning we feared we wouldn't have our 3rd anniversery. We celebrated it last night.

What I'm trying to say is have faith and keep your love strong. Every morning I thank the heavens for another day together. Every night I say my gratitude for the peace, love, happiness and health we do have in our lives. The paperwork, bills and red tape can all wait. We only have today. I don't know how long we will have together, but then we never really know that anyway. The stats were/are all against my husband, but stats be damned. They are only numbers. Live and love every moment you have. Our love seems to only grow stronger every day and we are not ready to let it go. That will be the greatest factor in our time left.

Peace, love, happiness and health,
Layne

bigd84

RebeccaJane said:

Hi there...your situation sounds very difficult. My husband is 28 and is down to the last 7 chemo treatments for colon cancer after his operation to have the tumour removed, he has had about 31 treatments over the past six months. I am 29 and we have a 4 year old daughter. The last six months have been hard but I am guessing nowhere near as hard as you and your family have had for the past year or so. You are doing great, you are doing all you can do.....you deserve a medal!!!! You both do...My husband has a friend who also has cancer of the brain and he is amazing and has totally defied the odds of survival. I honestly think he will live longer than us!!!! I know it must be hard to keep up and happy but just try to live for each day. Glad to hear you stopped drinking!!!! The occasional wine helps but not in excess.....as I discovered when my husband was first diagnosed!!! Take care....Rebecca

execdad-
i know what you mean, about being torn between elation and then not knowing about the future. you never know when to be happy. my mom is in a similar situation but i'll spare you the details. as everyone else had mentioned, taking it day by day is the only way to fly. it must be hard having younger children. my brother and i are both in college so we do our best to help my dad but i know he is struggling regardless. i guess the only words i have for you are not to beat yourself up for not knowing how to feel. my dad tries to keep things bright for her, she loves paris so they planned a trip and talk about it often, ignoring whether or not the time will actually come. he shows her pictures and old movies even though she may not be interested at the moment, but it does him good. your wifes a lucky lady to have such a caring husband, and i dont konw i think its ok sometimes when your torn between those position to jsut yell that it f'ing sucks, even if its just quietly to yourself in the shower. goodluck to you and your family.