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New Here....Neither a Survivor nor a Caregiver

karen1933
Posts: 6
Joined: Jun 2011

Hello

As of now, I do not fit in either category. I met a man online 7 months ago, we live 500 miles apart. I have been to see him 3 times with the next trip over the 4th of July weekend. We have planned for my relocation to his town in Sept after my youngest leaves for college to begin our life together.

On Sunday, his mother and brother took him to the ER after an episode of facial spasms and two weeks of his left hand being numb and weak (we thought it might have been carpal tunnel, everything pointed to that, until the facial spasm hit).

As of yesterday, they have said it's lung cancer that spread to the brain, although they have not yet done a lung biopsy. An MRI showed multiples masses on his brain.

The biopsy is scheduled for today.

I feel so helpless being so far...and unable to just hop on a plane to be with him mostly due to my job. I would move there now if my daughter had a place to live until she moves into her dorm.

He has a great family support system...and I'm so thankful for that.

We spend so much time on the phone. He's becoming very focused on the plan of action he wants to take towards his treatment and he is being so much stronger than I am...I haven't caught up with him yet I guess.

We still don't have all the details and hopefully more will be known today, but I just wanted to reach out...as I'm feeling pretty alone.

Noellesmom
Posts: 1302
Joined: Aug 2010

Having a friend will be a great comfort and help to him as he goes through the processes he now faces.

No one can do more than be a friend, Karen. It is a great gift.

karen1933
Posts: 6
Joined: Jun 2011

The news keeps getting worse...I'm devastated...this man is so wonderful...so good.

After the MRI, they found several on his brain, one of which has gone to the bone.

The lung biopsy is scheduled for today...he's requested a complete body scan.

By Thursday, he said all the info will be on hand and he will start making decisions on his treatment plan.

It feels as though my life has just completely spiraled out of control...

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Karen,

I know this news is unbearable but believe me the wealth of support that this site offers one couldn't even imagine. Take it one day at a time be there for support and when things get tough we are all here for you.

The great thing about this site None of us wanted to be here but this is the best thing I could have come across at the time i did.

We are all family in a way..This beast brought us together. We Unite here!!! We are all going through this or have been through it. Let others help you get through...

Sending love and compassion your way

Valerie "Caretaker and Daughter to My superman *father* stage IV stomach / espohagus cancer"

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

The same thing happened with me and my husband. He was diagnosed with lung cancer spread to the brain--we thought it was a stroke, initially. It was almost a year ago and I will never, ever forget the feelings of devastation and unreality. Try not to project ahead...you really just have to take one day at a time, it's the only way to get through it. Once he has a treatment plan you can go from there. I'm sorry, it must be so difficult being so far away from him. I will keep you in my thoughts.

Karen

karen1933
Posts: 6
Joined: Jun 2011

I am learning the hard way not to look ahead or project. One day, sometimes one moment, at a time. I keep coming back to the saying "life is what happens when you're making other plans."

He had his biopsy...and other scans are scheduled now as outpatient, so they are discharging him from the hospital today. I'm very happy for him...I know being home is something he really wanted.

Tomorrow is a big day...the results from the biopsy should be in and he has an appt for another scan, plus he will be seeing the oncologist to find out what is next.

He has talked about coming in to see me once he has some decisions in place and a plan set forth for treatment. I'm excited, but also know it may not be possible. I leave on the 30th of June to see him, which was planned a month ago. If his trip to me does not pan out, we just have to get through the next 3 weeks until I arrive there.

The worst part I think right now for me is my racing thoughts...I'm very careful to keep that to myself...but sometimes they drive me insane...sometimes they just cut my breath off. I literally have to get a hold of myself just to calm down and make them stop.

Besides medication, are there any suggestions to help with this? I'm hoping this is just a normal part of what is happening now.

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Just checking in on you. How are you holding up Karen??

karen1933
Posts: 6
Joined: Jun 2011

Thanks for checking on me...

Tonight is hard...tomorrow will be harder. He had a bone scan on Monday...tomorrow he sits with the oncologist and goes over all the test results...diagnosis, prognosis, and treatment will be discussed.

My trip is planned for June 25 - July 5.

My heart is heavy...my mind is racing...tomorrow is a pivotal moment for our future.

I've been trying to calm myself by not reading and researching so much...sometimes it just gets to be way to overwhelming...and it's so very difficult talking over the phone with him.

His left hand is basically not functioning now from the wrist. He did get a speaker phone the other day, so that helped a lot. There is so much to say..so much to talk about...but not yet..not until we know...something.

I just don't know what to say...to him...to anyone...I feel so alone right now.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

I haven't posted on this thread before, but I have been lurking and following your story. I hope the test results bring some peace. Often the unknown is scarier than the known. Best wishes and prayers. I hope you today brings some peace. You aren't alone. Keep us informed. Hugs and prayers, Fay

karen1933
Posts: 6
Joined: Jun 2011

His oncologist informed him today that the cancer is in many places, not just lung and brain.

He will be starting radiation (gamma) and chemo on Monday probably.

He is determined to fight this...his will is very strong. They have him on some pain meds, although I don't think it's directly related to the cancer, steroids to help the inflammation in his head, and are going to focus on the brain tumor so he can regain some use of his hand.

I leave on the 25th to stay with him until July 5th. Right now, it's one day at a time...sometimes I have to take just an hour at a time.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

Sometimes it's just one minute at a time. Hang in there. Have a good visit. Fay

karen1933
Posts: 6
Joined: Jun 2011

I don't even know where to begin...

There was no way to prepare for what I was facing when I arrived. Although I had some idea, it didn't even come close to reality.

Essentially, he is completely dependent on someone and unable to be alone for more than a couple of hours. I took him to radiation daily, which ended on July 1, but he had started chemo on June 30. Neither one of us knew what to expect with chemo. The cancer poison of choice was taxol and carbo and he was given about 4 pre-meds to waive off side effects.

The worst effect he had was constipation, which made him absolutely miserable for almost the whole week. He had been having trouble before because of the other meds he was on. Finally after talking with a doc on July 4 (had to call...it was really awful), we got him magnesium citrate and it literally took all day to finally work.

Emotionally it was a massive super roller coaster. We laughed...we cried...we fought...we sat in silence unable to find words.

Because he is missing one hand and has no use of the other, I did everything for him.

I plan on going back again the beginning of August. As far as me relocating, I don't know where that stands. His cancer is incurable, although they have not given any time frames.

He completed his second chemo treatment on Thursday and seems to have two good days afterwards, but by the third day (Saturday), he's down hard.

One miracle we did have was after his first chemo. Later that night, he had movement in his hand...no control or strength, but was able to flex his hand some.

We had met with his radiation doctor who explained that he was targeting the tumor to prevent more seizures. He's also on anti-seizure meds, and none have happened.

I'm stumbling along in my life now mostly. The distance makes it even harder than under regular circumstances. We'd be making our moving plans now if not for this...now...I might be making them alone since I was planning on moving to a smaller apartment anyway, closer to my job.

He hasn't said that he doesn't want me to move there...but we both know that I may not be able to make it alone there when he is not with me anymore. We both also know that once I leave here, coming back is not an option.

Never in my life have I been as lost as I am right now.

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