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Small Cell extensive lung cancer

jelli
Posts: 8
Joined: Jun 2012

I don't know why I am here. I don't know what to do anymore. I don't know how to help my mom, my family, or myself.

My mom was diagnosed in October of 2011 with SMLC extensive. She had gone in thinking it was her liver and it was, but it turned out to be lung cancer that had spread to liver, spine, hip, femur, nodes. Chemo started, radiation followed, and she responded very well. She went a couple months and then had to have her scans redone. Yesterday was RESULT day. This was the update:

***No other way to say this other than...My doctors visit did not go well. The cancer is already back in my lung, spine and liver. She is going to try a course of oral chemo this time but the progrnosis even with the treatment is only about 8 months. At first we did not know if I would be able to do the oral because I have to take it for 5 days, off 2 weeks and then 5 days again 6 times. The medication for each 1 week is 8000.00. The insurance company just called and said as soon as they get a preauthorization from my doctor they will cover it. YEAH!!! Those of you who know what I have been through know I will not give up but I don't know who much I can take. I am having more syptoms this time but if the chemo works as fast as last time hope for feeling better in a week or so. Thanks for your continued prayers. Please do not feel offended if CHuck answers my phone if you call. I have been really tired and sleeping a lot.***

Mom said after these pills she will not be trying any more forms of therapy.

As I said, I don't know what to do. I am a cross between a 5 year old and my 40 year old self. I am mad and I am scared that in a very relatively short time I won't be able to call my mom. Then I feel selfish because I am thinking of myself.

My mom lives in MI and I live in SC. I don't know whether to go now, go in August before school starts back up(which is my current plan), or what. I am trying to figure out if she was diagnosed in Oct of last year - it's been 8mths now.

People say pray. Well, God and I are still only on semi talking terms since my childhood. Can someone please tell me something besides pray?

I am a 40 year old mom of 5 and Nana to almost 3. I am the type of person that works with non profit, I volunteer, I help my neighbors, I adopt soldiers, etc. I help others. I just don't know now.

JEWELS1180
Posts: 8
Joined: Jun 2012

This is such a very tough position. I just lost my mom May 19th to lung cancer. She was diagnosed in early July 2011.
Do not feel selfish for your feelings. It is a huge ball of emotions when you go through something like this. If you can be with your mom now, do so. Do so while she is still here and able to talk and walk and function. At the end of my moms life, she was not herself. Her cancer spread to her brain and she also could not walk. How I longed for the days when I could talk to her as mother-daughter or even do simple tasks with her.
Be supportive and talk to her about everything you can think of. I bought my mom a book when she first got diagnosed. It was a book she filled out all about her life. She finally was able to finish it before she passed and it means so much to me.
I know everyone says pray. I am a Christian and believe in the power of prayer, BUT God has his own plan and it may not be the plan we want right now. Just pray for strength and courage and you and your family and mother go down this difficult path.
I wish you the best!

jelli
Posts: 8
Joined: Jun 2012

Thank you for responding.

Where did you find the book?

JEWELS1180
Posts: 8
Joined: Jun 2012

I bought it a Kohls. It's called "a mothers legacy". It says hallmark on the back so you could probably find it at hallmark or online as well.

jelli
Posts: 8
Joined: Jun 2012

I was hoping to hear from others with small cell lung cancer or their caregivers/family/friends.

TraceynRik
Posts: 1
Joined: Jun 2012

Hi Jelli,

I am Rik and I was diagnosed with small cell lung cancer in April of this year, my wife Tracey is here with me now. We came to this site seeking information on the journey we have been thrust into. I have undergone two rounds of unsuccessful chemo and the cancer spread, I just completed my first round of radiation which was quite sucessful. Now I find myself concerned with the next round of chemo (on a new type of medication)and the effects that it will have on me.

I am wondering what I can expect, can I handle it, will it be helpful or harmful? The first two rounds of chemo did nothing. I just don't know and like you I am looking for any suggestions. I am praying everyone is.

Hi Jelli,

I am Tracey, Rik's wife and my heart goes out to you. This is all so new to us that it seems like a dream, I wish it was a dream. It is hard especially when you just don't know what to do to help your loved one, I feel so powerless and we are all on an emotional rollercoaster. We try everything that we can think of and try to stay positive and motivated, but it seems that something is always getting in the way. I do know that without prayer I would be lost. The doctor well thats another subject. We wish that we could say more and are hoping that someone else can give us all some insight. Thinking of you and your family.

jelli
Posts: 8
Joined: Jun 2012

{{{{{Tracy and Rik}}}}}

Thank you SOOO much for talking to me. I am just so overwhelmed with emotion and my heart aches for you both. This is such a wicked and relentless disease. I feel as if I am having an out of body experience. Driving my car and not recalling how I got to the store. Crying at the drop of a hat. i don't recall much of the last 2 days. one minute it was 7am and the next it was 3:30 and then 10. Small complaints I feel in comparison to what most have going on.

I will definitely keep you both in my thoughts.

jelli aka Heather

jellibe2002@yahoo.com

Coco Gilmore
Posts: 9
Joined: Jun 2012

You sound like an amazing woman. Five kids, wow. What a blessing. And your mom, she must be very special as well (it's in the genes!). I hear me when I read about you ... I hear my mind going all over the place trying to figure out next steps. One thing I've learned w/3A lung cancer is that I just can't predict or plan anything other than the moment. sounds hoaky, but it's true. Each day brings good moods, weak moments, the whole gamet. I know it's hard, but just take it one day at a time with your mom, let her talk and talk and talk (when she's able). Listening is very powerful and helpful to us all. sorry, but prayer too is a form of 'listening'. You can't change anything, but you can prepare, you can focus on today, you can listen and you must continue to be the amazing woman you are. I don't even know you, but I love you....stay strong as you can.
coco

jelli
Posts: 8
Joined: Jun 2012

5 kids(ages 25 down to 16)... yes, I was meant to be a mother. I was meant to love.

Mom is very special. :)

You're right in the fact we can't predict anything. Living in the moment. Being mindful. Common sense tells me these things, but my reality isn't allowing for it right now. I can't focus.

Mom is so tired right now and she isn't talking a lot. That's the part of having such a geographical distance between her being in Michigan and me in SC. I can't see what's going on and I don't trust many of the people there to be vigilant or forth coming with information. I know I can't control everything though. I think I've been trying to control since I feel such a lack of control. If that makes sense.

My plans are now to go to Michigan no later than August 1st. My mom told me not long ago that she could never ask for a better advocate other than her husband and myself. I appreciated that compliment so much. Mom got me when I was 4yrs old and she never left me. I have abandonment issues from my childhood so that point is extremely important. It caused us to bond, be loyal, and protective beyond belief. She never left me and now I feel such guilt that I am not right there.

I want to call. She's to tired to talk or just doesn't feel like it sometimes. I'm fretful of the day when I can't say "hey, is mom there?"

I wonder if I should just write her a letter and tell her everything I feel?.?. Is that okay? I would never want to be part of the stress.

{{{{{Coco}}}}}

Sending you my thoughts,

jelli

jelli
Posts: 8
Joined: Jun 2012

Well. it is official. I turned in my resignation today. It was one of the hardest decisions I have ever had to make. I will be done working the end of August. Chuck and I decided it was more than time for me to think about myself and begin to relax and take it easier. That is easier said than done after working for over 40 years but I agree it is time.

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