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Heather M.

Hello everyone

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I have been dreading writing this because it hurts to relive the past two months, but here goes nothing. It all started on September 12, 2004. It was a normal Sunday afternoon until mid-afternoon. My mom has been living with us (my husband, and three children) since April while her house is being built. We were out in the backyard talking, when all of a sudden, she stopped making sense. I can't put into words how terrified I became. She had complained of a headache about an hour earlier, but she is prone to migraines, so she took one of her magic pills and seemed to be doing better. I immediately went into the house and got my husband. I told him that I thought she was having a stroke. After observing her for a minute or so, he said to call an ambulance. Our lives were to be forever changed and no longer will I feel total happiness or security.

At our local hospital, they did a CT scan and said that she had had a stroke, but there were some spots on her brain that they didn't know what were so they were sending her to Fresno. Before they could get her transportation arranged, she had a seizure and they had to sedate her. She was then put on a ventilator and flown by helicopter to UMC in Fresno.

She had been in Fresno about 3 hours when her doctors informed us that she had not had a stroke, but that she had suspicious spots on her brain (3). Over the next 11 days, we would be told she had a parasite on her brain, that she might have valley fever (cocci), and finally on September 21, 2004 we received the news that she had lung cancer and brain mets.

I have been dreading those words since I was a young girl. My mother had been a heavy smoker for almost 50 years and my grandmother died in 1991 from lung cancer. After completely falling apart for a few days, I decided that I wasn't going to let this dreaded disease steal her from us without a major battle.

To completely understand my situation, I must give you a little history. My parents divorced in 1983 and from then on my mother and I have been inseparable. She is my best friend and my whole world! To think of living one second in a world without her is too much for me bare. I will never be truly happy again.

The ugly diagnosis is small cell lung cancer in the lymph nodes around her trachea and 3 brain mets. There are also 2 other spots, one under her breasts and one further in. She also has Superior Vena Cava Syndrome. She had 10 radiation treatments on her brain and has just complete her sixth chemo treatment (carboplatin and another that has I can't remeber but starts with an e). She also was on Decadron during her radiation.

She went through the first session of chemo fine. This one has caused a lot of nausea and she has a hard time eating because she says everything tastes metallic. Radiation caused her scalp to blister and she was in agony.

I try to keep an upbeat attitude for her. Inside I am dying. I have three kids who worship her. My baby is barely 3 and I wonder if she will remember her "ramma" when she dies. I am so scared. Thank you for listening. I welcome any comments.

Thank you!

Heather M.

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Heather,

Welcome, but I am so sorry you had to find us. You will find this website full of wonderful people and you will get lots of support and information!

Don't give up on your mom, she is a fighter and there are lots of treatments out there. This journey is soooo scary, especially when you embark on it. However, you will find lot of people on this board with small cell lung cancer and brain mets who are doing just fine!

Please take care of yourself b/c itis so easy to run yourself down with worry.

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Hi there Heather. Pleased to meet you.

Sorry to hear about your mother, but glad to hear you're ready to put up a good fight. All too often, cancer patients are written off by the esteemed medical community, and sometimes even by their own family members. If you have spent any time reading some of the wonderful stories of survival by any of the people here on the board that are still around many years after being written off after their initial diagnosis, you will find quite a few success stories.

Ask lots of questions - chances are they will be answered by someone here who has "been there, done that". Good luck, stay strong, take care, and keep us posted.

David P.

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Hi Heather,

I am sorry that you had the need to find us. You have come to the right place tho. We will cry with you , share a laugh with you or just plain ole listen.

You have the right attitude about fighting this but you must remember it is your mothers fight. There are a lot of SCLC survivors here to help you on this journey. Come here often and just read or post whichever you need. Good luck and take care of yourself as well. You are no benifit to your mom if you get run down yourself.

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Hi Heather,

And welcome to the club no one wants to join. But now that you are here it will help you and your Mother on your journey. There is so much support and caring here and many times good information about the treatments and side effects that can really help you.

Keep us posted. I will keep your Mother in my prayers.

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Hi Heather,

I can relate very well to your whole world changing in one day. I wish you and your mom strength for the battle ahead. My husband also has Superior Vena Cava syndrome. There is much information here, read and ask questions. We're all here for you.

Rochelle

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Hi Heather,Welcome to our family.You will find lots of caring and knowing people here.Spen a little time reading everyones signatures and you'll notice lots of survivors here as well.Just ab out anything that comes up on you & your mom's journey w/ this there is usually someone here who had to do the same thing.Don't give up and don't listen to statistics.Every day they are making advancements in medicine and tecnology.

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Welcome Heather! It sounds like you've got what it takes to win this battle....attitude and determination. Good luck and come back often to let us know how you and your mother are doing!

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Suddenly I don't feel so alone. You all have been wonderful to reply so quickly. I didn't mention in my introduction that I am taking care of my mom with very little help from anyone else. My husband works 40+ a week and my brothers and sister live hours from here. I love taking care of her, but sometimes I feel overwhelmed and lonely. It really helps to know there are others going through the same thing I am. My mom will probably write too. Her energy has really diminished the last week or so. She was also nauseated and struggling to eat, but she woke up this morning hungry and has eaten twice. Her feet are swollen and we're not sure why. She was on Decadron during radiation and gained almost 25 pounds from water retention. Everything has gone down to its normal size except her feet. She coughed a little last night for the first time in weeks. I guess we'll just have to pray that everything will be okay. Thanks again for your support. I truly feel that God led me to this web site. You all are truly amazing!

Heather M.

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Hi Heather,

Though I'm very sorry to hear about your mom, I'm so glad you found us here and hope that you find it as much a place of inspiration as I have. I can relate to the feelings you've described because like alot of caregivers here, I'm going through the same thing.

If theres one "good" thing about SCLC is that (according to the oncologists I've spoken to) is that it usually responds very well to chemo and radiation.

I suspect your mom is on the same chemo mine is. Cisplatin and Etoposide. I believe it is also called VP-16. So far, we've had good results with it, and mom is tolerating it fairly well. Just make sure that your doctors are aware of any side effects, like the swollen feet, and don't let your mom decide to "muddle through" because she doesn't want to be a "bother" to the doctors/nurses.

You might find that having your mom use plastic utensils will help diminish that metallic taste of foods. I've also heard that cinnamon helps with the odd tastes that things take on while on chemo. Everyone is different of course, but give it a try.

There are a lot of caring people here with tons of experience and advice. Don't be afraid to ask!

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Welcome Heather (and your Mom, too) :)

I know you both must be so overwhelmed right now.....it's such a lot of information to digest is so short a time.

The metallic taste usually fades over time; it comes from the heavy metal (platinum) in the chemo. Good thing is, SCLC usually responds very well to chemo.

A little advice for you since you are your mother's primary caregiver: start a journal. Keep daily logs re: appetite, side-effects, moods, physical concerns (like the swelling in her feet), questions you might think of. Makes it so much easier when you visit the doc....with everything going on it is so easy to forget to mention something or ask a question you've been wondering about.

Most importantly, make sure you take some "me-time" for yourself as your able.....your health and state of mind is important, too!! Even 30 minutes, just to put on the radio, take a bath, close your eyes and relax.....works wonders!

Looking forward to hearing more from you and your mom, and wishing you the best.

Mary

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Heather,

I just wanted to say welcome and I wish you and your mom only the best. You have already gotten some great advice. Write as often as you like ...come here to vent, cry, laugh and ask questions. That's what we are here for. Nice to meet you.

Nina

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Welcome Heather. Aren't these amazing posts by so many folks on this board? I feel like we are our own kind of special family here.

My hubbie also started out with vena cava syndrome - as you can read at the bottom. Like so many others it has been a rollar coaster for us. Now we are at a level place and enjoying it.

I recently read that the medical community hopes to downgrade lung cancer's label from being 'fatal' to 'chronic'. That is a little encouraging, anyway.

Best wishes,

Cyndy

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Hi Heather,

It's nice to "meet" you and I'm glad you found a place where you will receive support, understanding and information.

It sounds as though your Mom is doing well considering what she's been through. Your world does turn upside down when you hear those words: you have lung cancer.

There's not much you and your Mom will face that hasn't been met by at least one or two or the posters here and everyone is always willing to share their experience, lift your spirits and provide a shoulder to cry on.

God bless you and all your family!

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Welcome, although I am fairly new here I can tell you that you have come to the right place. Just in the short time I have been visiting here my outlook is already brighter. Take care of yourself also because your mom needs you healthy and strong.

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Hi, Heather. Welcome to the room, although I believe you joined a few days before me. I'm here less than a week, and I'm enjoying reading the posts and getting to know some wonderful people. I was diagnosed in '02 with non-small cell lung cancer primary, Stage 4. I had a brain mets. I'm in remission today. And I'm only 44.

It's OK to "die inside" when you think of your mom. She's your greatest gift. Just be strong for her. Let her know that you're hurting, but try not to say things that might make her feel guilty for getting the illness. I found myself spending a lot more time with my nephews and niece. They always made me smile. That might be good medicine for your mom, having her grandchildren to keep her thoughts occupied with positive things.

Keep coming back to this site. You're going to find amazing inspiration here. I've already found it. I wish you and your family all the best.

Tom

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