[Need Some Answers]

My mother's story can be found here : http://events.lungevity.org/site/TR/Events/General?pxfid=21570&fr_id=1030&pg=fund

My mother has become very weak (cannot sit up on her own). She has begun hallucinating.

I'm not sure where we are - months - weeks etc.???

Anyone have any good info or experience with this so that we are not stuck in the dark?

[Hello...I'm a newbie]

Hello everyone,

Just wanted to provide an update since I haven't posted anything in quite awhile.

First, my mother is still battling!

30 days is what the doctor's said in December. Hmmmmmm.

Here is my up-to-date story: http://www.thebagandthecrow.com/2011/03/15/crowmother-help-end-lung-cancer/

I am still very angry but have been channeling my anger into this: http://www.thebagandthecrow.com/2011/03/22/preorder-crowmother-help-end-lung-cancer-enter-to-win-rare-items-from-jack-ketchum-zach-mccain/

This one's for all of YOU!

I know it's a tad dark for most people but if you could spread the word it would be great! Great cause!!

Jassen

[Hello...I'm a newbie]

On Dec. 7th my mother was taken to the hospital after she fell and could not get her legs to move. She was very confused and could not add 5 + 1. This was due to a decrease in her steroids.

I was faced with many tough decsions this past week. Options to shunt her brain to drain excess fluid were put on the table. None of these things were going to improve her quality of life greatly and actually posed more risks.

The decisions fell upon me. I heard my mother tell the chaplain that she feels safe when I'm around. Many times over the last few weeks she has told me things were going to be alright. See, my mother is tough, and she is a warrior.

I made the decision to change the course of the treatment so that she doesn't have to suffer. The doctors at the time felt she should not be included in the discussion of the shunt because she was so confused and was happy and did not feel any pain. I feel guilty for having made decisions that effect her life without her knowledge. She trusts me.

I had to fight to get her insurance through the state. I told them that I would not have my mother released until she had insurance and that it would be very costly to leave her in the hospital for the next 10 days while they dragged there feet to make a decison. She got insured that afternoon.

I made the choice to bring her home with the help of Hospice. She was released on Friday night. Since then, she has become much more mobile as well as alert. Yesterday, she questioned me about when she was going to have to go for chemo. I then took the time to talk to her about the difficult choices I had had to make. She was not angry but as the reality set in, became extremely emotional. I asked her to forgive me, and told her I didn't want her to suffer.

Everytime I am away from home my anxiety level increases and I become extremely emotional. This is such a difficult process.

I own and operate The Bag And The Crow which is a horror T-shirt company. I am designing a shirt dedicated to my mother's courage and strength throughout this battle. This tee is for all of the people that have had to battle. A portion of proceeds will got to LUNGevity as I believe in its mission.

My heart is heavy,

Jassen

[Hello...I'm a newbie]

My mother finishes with radiation mid-week next week and then depending on what the neurologist see in the latest head scans, she will either be starting chemotherapy or having some procedure from the neurologist.

In the meantime, things are just bananas. Since I last updated, my mother was given another seizure medication and her steroids were increased to 6mg 4x daily. She is still very coherent but is sleeping most of the time. Her legs don't fuction correctly and she confuses her wording oftern.

The good news is that she likes to be informed and likes to be in control of things as much as possible. People keep discussing Power of Attorney and Wills and this and that. Trying to get things in order is very difficult when you are one of two primary caregivers and there are appointments everyday.

I wish I could go for a drive and scream or have time to punch my punching bag. There really is no time for my wife or I to vent. We are the only caretakers. We have been told that my mother will not be able to receive hospice until she is done therapy.

I am equally tired of people taking to me about my mother tapping out on treatment. It is my mother's choice. It's her body and she is able to communicate her desires. The ER Dr. talked with us about this and I later found out that my mother's chart was wrong at the hospital. It indicated she had congestive heart failure and diabetes amongst other things. This is not the case and I now wonder if she got the care she deserved. They were going to release her without having a Dr. speak to me and without a plan in place.

I am both mentally and physically exhausted. Like my mother, I will keep fighting. I just wish the coordination of services was better.

Thanks for reading my ramble,

Jassen

[Hello...I'm a newbie]

Hi just a quick update. My mother was taken to the ER this morning after she was awake but unreponsive to verbal questions. She looked very confused.

The ER Dr. seems to think it is possible thre radiation could be irritating the tumor resulting in increased swelling in the brain. The ER nurse told my uncle he should say what he had to say while he had a chance.

I am not ready to hear these types of things. In my mind, I want to believe that she will have some more enjoyable days ahead. Things are tough and my heart is heavy.

Thanks for all of your replies and support.

Jassen

[Hello...I'm a newbie]

Yesterday I became concerned with the cough and her more labored breathing, so I called the cancer center. They could not get her in so they referred me to her primary care physician who called back late afternoon just after radiation and recommended that I take her to the ER.

So I took her to the ER which was overloaded due to a nurses strike at the other local ER. THe triage nurse checked her vitals and said they were "good". After waiting an hour in the waiting room and seeing how tired my mother was (in addition to the fact that there were so many ill people that could potentially infect her), I decided to take her home instead of waiting 3 - 4 hours to see a dr.

It ended up being a good call as everything ended up okay. I have never been through this and their are so many ups and downs. The radiation is kicking her *ss. She is beyond fatigued.

Today she fell and I had to pick her up.

The strength it takes when your heart is broken to function is incredible. I feel like I have the weight of the world on my shoulders. In addition to the increasingly more level of care of my mother, my wife and child are having to grieve and deal with this as well. I have noticed if I let anything really get to me, it effects the rest of them. It is soooo hard to maintain strength and not be able to really let things out. Sometimes I feel like I'm going to explode.

Jassen

[Hello...I'm a newbie]

Today was a tough day for my mother. This is her second week receiving radiation treatment to her head. She has been increasingly lethargic. So much so, that tonight she went to bed at 8pm.

She has been sleeping on and off throughout the day and tonight I noticed she developed a cough. Sounds like a smoker's cough. She also is cannot remember things that occurred during the day and stated that her legs feel "funny." Are these symptoms normal?

It is hard to know the level of care needed day to day since it just seems to be getting increasingly difficult for her to function during the course of a day.

Thanks

Jassen

[Hello...I'm a newbie]

Thank you for your replies. I seriously appreciate you all taking time out of your day and thoughtfully replying to this very difficult circumstance.

Your stories are all amazing. It helps to read them and to see what you have been through. It also gives me some hope when I thought the hope well had run dry.

Jassen

[Hello...I'm a newbie]

Hello,

My name is Jassen. My wife suggested that maybe I check one of these forums out since I have no real support through friends elsewhere.

On October 9th, I took my mother to the ER after she fell twice in the same day in my presence. A tumor was found on the left frontal lobe of my mother's brain (a biopsy was conducted). From there, a cat scan was done and a small nodule was found on her lung. She was released from the hospital after 6 days.

She was put on steroids and an anti-seizure medication as well as Prilosec. Five days later her primary care physician informed us that she had lung cancer. In the meantime, her energy was low and her balance was off. She also was experiencing more and more seizures.

A week later, she was scheduled to go to cancer care and a few days it was decided that she would begin radiation for 10 minutes 5x weekly and after 6 - 8 weeks she would beging chemotherapy for her lung.

My mother lives with me, my wife, and our daughter. I am experiencing lots of anger and rage. I feel very alone and understand my wife cannot shoulder my emotions. My father died in 2006. I have no siblings and I have no other family members to lean on. Two close friends have died in the last 3 years. I am 35 years old.

This is the beginning of the second week of radiation treatment and her symptoms are getting worse. She cannot walk very far due to seizures and her memory is getting worse. She also is complaining that her eyes are not adjusting at times.

The symptoms were so confusing. From our standpoint, it looked as if my mother was getting depressed. She began lacking energy and motivation. She insisted she was fine and sometimes complained of having "dizzy spells."

My mother is stage 4 and has been given about 12 months to live with treatment or 6 months without. It was devastating to get that information last Thursday and then watch my daughter and mother embrace and cry real tears of pain.

I am very close to my mother and my heart is broken. I cry a ton which is very unusual for me. Not sure how to deal with all of this.

Thanks for listening,

Jassen