Where to Begin.......

[Steph74]

My name is Stephanie, I'm 32 yrs old and live in Chicago IL. I thought I was a pretty lucky person, got married last year to a great guy, bought a house, got a great new job. Suddenly my life took a turn for the worse. My mom, Jackie (age 54) had a cough since Dec 05. Doctors all said pneumonia - she kept coughing for 3 months - 5 x-rays, multiple antibiotics, even a hospital stay - all said Pneumonia. Finally, after nothing was working, they had her see a specialist. Turns out it's Stage IV adeno NSCLC. My mom has never even tried a cigarette in her life, nor lived with anyone who smoked. She was perfectly healthy until this happened to us. She is divorced and I am her only child. It's only us in Illinois, so I'm sole caregiver. My Dad lives in Ohio and has SCA1, he got it from his mother (it's a neurological degenerative disease similar to Huntingtons - he's 57). Never thought I'd be dealing with both parents sick at 32 yrs old. Due to the fact that my mom is sick, I decided to try to get pregnant; I would want her to see her grandchild before anything happens to her. Since I wanted to try for a baby I went a few weeks ago to get a blood genetic test done for the SCA1 (it's a genetic inheritance and I had a 50% chance of getting it from my Dad). Turns out this week that I'm positive for the disease. How does your life go from WONDERFUL to HELL on earth in a matter of a few months? My mom is my everything - my best friend, it's been her and I on our own since I was 5 yrs old. Now I know my future too and it's scary. There is no treatment or cure for SCA1, so it's kind of like wait and see, doctors told me I will probably start showing signs in my 40s. I now have an idea of what she is going through, to have something in your body that you have no control over. I don't know how people can deal with it. I know this is probably a crazy post - but I needed to vent. I'm paranoid with every ache or pain - could it be due to the SCA1 or could I have cancer or is it in my head? My mother's mom died of lymphoma at the age of 25 (mom was three) - so I'm not sure if there is a genetic factor there also. Anyway, thanks for listening, I have been reading many of your stories and you are all so STRONG and I admire each of you.

[Littlegirl]

Stephanie - I am so sorry that all of these horrible things have hit you all at once. I am sure your head is spinning. There are several Stage IV survivors on this website so don't lose hope that your mom can be a long term survivor as well.

I don't know anything about SCA1. Is it possible that you could be a carrier for the gene and never actually have any symptoms of the disease? It IS possible that they will develop a treatment or cure before you would show signs of the disease! I'm praying that you find some more peaceful days ahead and that you and your family start getting some good news for a change. Hang in there!

[Steph74]

Thank you for your reply, I'm staying positive for my mom, and have been trying to educate people on lung cancer and have written to our politicians. It's just been rough lately. They have told me there is pretty much a 100% chance of me showing signs, since it's in my DNA. I hope and pray there will be some progress on the medical front for both SCA1 and lung cancer - I guess I just have to get my head wrapped around this. Take care,

[hollyanne]

Steph -

I sent you a PM as well...first take a deep breath, You will make it through all that is being out before you. You will be shocked at how strong you can be when you need to be.

I am sorry that you had to find us, yet grateful that you did. the people on this board will provide you with a lifeline of support and information. I never could have made it through my mom's illness without this support.

Where does you mom have mets? (she is stage IV, right?) How is she doing now? Is there a treatment plan in place? How is her attitude?

I know that everything seems to be crashing down on you right now. Prayers for peace of mind for you and strength. My mom too was my best friend. I still don't understand why this terrible disease happened to her..as I am sure you don't understand. remember to accept the diagnosis, but forget about the statistics...help your mom fight this!

Please keep us posted on her and on your situation as well.

Much love,

Holly

[Treebywater]

That is such a lot to have on your plate right now. I'm glad though, that you came here, and I hope we can support you through any and all of it. I don't know why it seems like life piles things on all at once... I hurt for you.

[Frank Lamb]

Stephanie,I am very sorry you have been dealt so much at once to deal with.

There are many here with lots of experience to help you.As for dealing with your mom's lung cancer diagnosis please know that there are many of us here living and doing ok after being told we had only a few months to live.

A good team of drs,positive attitude,and more and more options available all the time are allowing many lc patients longer and better quality of life.

[joanie55]

Stephanie,

I'm so sorry you had to be hit from all sides at once. Just having a LC diagnosis is enough to send anyone into a tailspin. But with your own dx, I just really feel the pain your going through.

You do need to feel there is hope though.

I also have a best friend who is my daughter (age 27), getting married next month. My son's wife just gave birth (3 weeks ago), to my first grandchild. Just like you, they decided not to wait for that baby. And believe me, it was the best gift they could have given me.

Even though I'm also stage IV, I have to say this last year has been one of the best in my life. I know that sounds pretty weird, but in certain ways, it's true. My dx has enabled me to spend the time with my loved ones that I wouldn't have otherwise and to enjoy each and every second of every day. Medicine has also come a long way and every day they are coming a little bit closer, even if only by prolonging our lives.

So, don't dispair, even with your dx. Enjoy every day and just make sure you get the proper care for your mom and yourself. Second opinions are really important.

Well, I think I've rattled on enough. Best wishes and welcome.

Joan

[mamasbabygirl]

Stephanie,

I can soo relate with what you are going through and I am sorry. It is so hard to not worry every second of every day. My mom is 52 and a 2 year survivor of NSCLC Stage IV with brain meastases. My dad died at age 40 after having kidney disease and a successful transplant. My 2 boys could have kidney disease and this worries me constantly. I decided to have kids anyway despite genetics.

This rollercoaster which seems to be dipping right now will surely have it's up moments and I cling to those. Keep your chin up. You will be stronger because of it. I am 33 by the way...I never thought I'd be here at age 33, but here I am. I have learned so much about life and myself through all of this. God won't give you more than you can handle, although some days it is hard to believe it.

Prayers for your strength and being there for your mom, even when it seems like she is sitting out.

As Amie (Bunny) and I say, "You can doooooooooooo it!"

A very warm welcome...

[Maryanne]

Hi Stephanie,

Welcome to our group. My heart went out to you when I read all the negative things that has happened in your life since your marriage. I wish I could do something to relieve your pain as you must be so scared.

I know how shocked and scared you were to find out that she was stage IV and never smoked. It just is not fair when that happens to non smokers. Not that it is for smokers ( it certainly isn't) but people are aware of the hazzards of being a smoker. Our public has to start being aware that LC could happen to anyone and we must get funding to help find a cure or at least early detection.

My heart goes to you with your own diagnosis, I will read up your condition so I could understand it more.

We are always here for you. You do not have to go through this alone. Please keep us posted on your mom and you.

I will put you and your mom in my pryers and pray for some of this heavy burden to be lifted from you.

Maryanne

[Kasey]

Wow Stephainie!!!! You have such an overwhelming burden to deal with right now. I am so sorry that you have any of it to cope with...........let alone EVERYTHING. Try to take a step back and a deep breath at this time. As difficult as it may seem.......take one tiny step at a time.......one thing at a time. Looking at the WHOLE picture at once will be just to much, ya know?

Gather all the info you can, be as prepared as you can be. You are worried about your own SCA1. I will have to read up on that..........not familiar with it at all. Is it possible, for now anyway, to put that aside and focus just on LC? Shocked you must be at this dx for your Mom. Our family is facing a similar situation with a 39 yo niece who has never smoked as well. There are MANY things that can help make this manageable, Steph. Hang onto that hope for right now. Try also to get your bearings and know that we are here to help you as much as we can.

Kasey

[Don Wood]

Welcome Stephanie! You have had a lot thrown at you at once. My daughter says she used to breeze through the family medical survey and now she has to stop and check everything and explain (between her mother and me). So sorry you have to contend with so much at a young age. Vent anytime you need. That is why we are here. Keep us posted. Don

[MsC1210]

Stephanie,

I am so sorry you had to find this board, but as you can probably see, it is a wonderful place to gain support and information as well as vent.

I feel so badly that all of this is happening to you at once. My best advice is to just take things a day at a time and try to remain positive. Not easy I know...

My thoughts and prayers are with you and your family,

[ma's kid]

So much to deal with but please know that we are here for you, Steph. Lean on us when you need to, ok.

You and your mom are in my prayers.

Blessings,

Libby

[EastCoastLadi]

Stephanie,

I have to say, you have come to the right place, I know it must seem so surreal to you, and it does truly suck, one bad thing after the other, it isn't fair! I wish I had the answer to "why?". You're worried and rightfully so, but please know one thing you are not alone....you will find many, many kind and wonderful people here who will be there for you.. and if I can help you in anyway...please don't hesitate to let me know....many prayers and good thoughts are going out for you and your family right now.

Grace

[hopeandstrength]

Hi Stephanie,

I agree with what you said about feeling lucky and then having so many negative things thrown at you. It is truly a shock. I know how helpless it can make you feel. Please know that we are here and care.

Cathy

[Kaffie]

Stephanie,

Wow, you sure got more than your fair share of negatives thrown at you at once.

Please take it slowly, there is no way you can absorb everything at once and remember this

is a wonderful place to vent, get support and

information.

Kathy

[Don M]

Hi Stephanie and welcome to this board.

You sure have a tough row to hoe. Just deal with supporting your mom for now. I assume your dad has a support system in place where he lives. As soon as she gets a treatment plan going, things will level off a bit.

Apparently you have a good 10 years ahead of you before you yourself get cloberred with health problems. Hopefully, in 10 years time, there would be enough strides in medicine to help you. Stem cell research may be the key.

In the meantime, be with and help your mom.

You all have my prayers.

Don M

[ztweb]

Stephanie,

I am so very sorry for your news. I know it is hard to hear, but I am one of those who really believes there is a reason for all the madness! I am sorry this has to be so difficult. My mom has had a cough for months now too...they keep telling her that it is pneumonia, so when I read your post I got the chills...Urgh!!!!!

I will pray for you and for your family. Can you pass the disease on to your children? Life is such a precious gift. Make each day with your mom, your husband, friends, and family a day to remember. God bless you today and always. I will pray for you.