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New to the entire thing; some thoughts

lcartier
Posts: 9
Joined: Jul 2006

Greetings to all. I have taken time over the past few days to read the various threads, the words of optimism, to witness the support and view the exchange of experiences. Warmed my heart. I am a 46-year old newlywed and mother of a 10-year old angel daughter. I was diagnosed with IIIB NSCLC on 6/14. Since then, as you can imagine, I have been scanned, poked and scoped silly while attempting to keep my head from spinning completely off my shoulders. So many questions, so many emotions. Just had my porta-cath inserted on Monday and will start my radiation tomorrow (5xweek) which will be coupled with chemo once a week. I have siginificant lymphatic involvement and a large tumor in the right upper lobe that nearly blocks the right bronchial tube. I must say, I have nearly been worn down by the diagnostics alone -- pain management has become an issue (even harder to breathe when every breath causes pain), but, I'll get that situated shortly.
Just wanted to send a warm smile to everyone and to let you know that I am here, hopefully both as a giver and taker of the benefits of this group. Who would have ever thought? . . .
Please feel free to email me anytime - about anything. I wish you all well and thank you in advance for your "being there" for me and others like me. Regards, Lauri

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

Welcome Lauri, and thanks for joining us.
I'm a five year survivor of nsclc, 3a. You can view my web page at "Grateful Survivor". Your case seems to parallel mine, somewhat. The poking and prodding will subside soon, and you'll be on the road to beating this. Keep a strong, positive attitude. Don't listen to statistics and/prognoses, - they are just mostly irrelevant numbers. Concentrate, instead, on what the doctors tell you to do to help with, and be involved in, your treatment(s). I always found it best to have someone accompany me to my doctor visits, so that, together we would retain and understand more of what we were told. Patients nowadays purchase small, portable voice recorders, and record the meetings. That way, you can review what was discussed, in a more relaxed atmosphere at home, without the possibility of disagreementof what each person heard.
As you progress, you will have more questions. There are many people here just waiting to help. Use them/us. WE will learn from you, as you will learn from us. Best wishes. Keep us posted.

reinstones1's picture
reinstones1
Posts: 92
Joined: Feb 2006

Hi Lauri, and welcome. You are an inspiration-- diagnosed 3 short weeks ago, and already here offering support to others? You're amazing. You and your family will be in my thoughts and prayers.

I hope you will keep us posted on your journey, and let us help you through it!

Best wishes.

lcartier
Posts: 9
Joined: Jul 2006

Plymouthean and reinstones -- no, certainly do not find me an inspiration -- I am frightened beyond fear, in pain beyond my limits, and, for once in my life, out of control. I should be so lucky to be in the same shoes as Plymouthean (yes, have read your story - and, bravo to you, I am so happy!) . . . I have a "feeling" about things -- no, don't mean to be pessimistic, etc., but, I have a feeling and I know me. All of this is so new . . . so many things and people to consider. But, I am now part of a "new" life group that I never was before . . . I'll gladly make use of your wisdom, experience and thoughts . . . if you can put up with my fright, panic and sorrow. It's a deal. I just needed someplace to go --

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

Hi, again, Lauri.
Just to add a small point. We here at CSN don't "put up" with anything, - we welcome your burden as ours. Please "feel free", as the saying goes. These people have the broadest shoulders you will ever find. We don't have all the answers, but we sure do have the experiences. You can't experience anything that we, collectively, haven't experienced. Whether caregivers or patients, we've either "been there", or we are still there. Lean on us, - please.

reinstones1's picture
reinstones1
Posts: 92
Joined: Feb 2006

Dear Lauri-- Plymouthean can give you a direct perspective that I cannot-- he has fought cancer and won.

In my case, my Mother has lung cancer, having been diagnosed in 12/05. I would never attempt to know exactly what you're going through as the patient-- but I know all too well the feelings of fear, panic, dread, etc. that come immediately after the diagnosis. That's the part that we can ALL share.

You will come out of this panicky stage. Trust in that. Right now, when it's too dark to see, reach out for someone else's hand-- as corny as that sounds, you will need help to get through this. You probably don't want to burden your young daughter with too many details-- so you'll need your husband, and others going through it. No one takes the same path or has the same exact outcome but the fear is the common denominator. Time has helped me overcome much of my fear, and my Mom's positive attitude and strong will have carried her through.

That said, we still have horrible, scary days. Panicky times. But they no longer outnumber the good times. This will happen for you too.

Sure, life isn't the same any more. We have a "new normal now". Would Mom go back to the way things were before? Of course. But we can't. Cruddy or not, this is where we are. But as Mom says, "sometimes I actually have days now where I can almost forget that I have cancer. I am learning to live in a different way, and be grateful for new things".

Blessings to you.

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

Lauri,
I was diagnosed Stage IV NSCLC in August 2005 with a pleura effusion of the right lung. I was told that that there was no cure, that it was inoperable, and radiation could not be used. My story is posted here just type ernrol in the search box above and then click on ernrol to the right. There you will find my story along with a lot of things I did. I am now in remission. My best statistic is that 100% of the people that God wants to cure will be cured. And you have to believe that he wants to cure your dad. I am now in remission with no disease. I know of people taking Tarceva going into remission with cancer similar to your dads. Let me know if I can give you any more info after reading my web posting.

Ernie

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

Lauri,
I apologies for the last posting. I try to reply to as many postings that I feel I can give encouragement to. I am such a lousy speller that I copy everything into word so I can do a spell check, and I copied the wrong paragraph, sorry. At Least you know that I am humane. My story is posted here just type ernrol in the search box above and then click on ernrol to the right. I know that reinstones 1 and plymouthean both try to help as many people as possible. We feel a calling to do this. Consider us part of your team do beat this, we have all seen some great results from thinking positive. Sorry for the goof and welcome to the group.
Ernie

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

Just to let you know that you are in our prayers today.

Ernie

lcartier
Posts: 9
Joined: Jul 2006

Thank you all for your kind notes. Had my first radiation treatment today and was given my "schedule" for the next 6 weeks.

Wondered -- did any of you find a certain level of tension or strife in your marriage after diagnosis? Don't get me wrong - I am married to a wonderful man who won't leave my side but . . . maybe its just my own guilty feelings for being ill and my saddness for causing such a change in his life, as well. He's not as verbal as I am, so, I know I am not hearing things from him that should be said and I refrain from saying some things I want to say because I don't want to hurt him any more or "sway" him one direction or the other. I guess I just noticed alot of that over the long weekend (while we were cooped up together for 4 days because it is difficult for me to be outdoors and breathe in the humidity) -- perhaps too much closeness. I'd appreciate your thoughts.
Lauri

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

Get off the guilty thing right away! You didn't bring this on. You haven't brought on any changes in your husband's life. Sure, things will change, for awhile, but that's not your fault. My guess would be that your husband is probably very upset that you are ill and there's no way he can make you well again. That makes a guy feel powerless, - a big blow to the ego. Also, in the beginning, we simply don't know what to say, for fear of saying the wrong thing. You said it yourself, - you are afraid to say some things to him.
The good news is that this is all very normal. Right now, tell him that you love him, and that you are very happy to be married to him. Don't apologize for being ill. As you go through treatment, you will both have much to discuss, and you will be fine. Remind each other that this is a bump in the road (OK, - a pothole!), and things will be back to normal when you get through this.

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

Lauri,
Dont feel guilty. Things are very tough at first. My wife and daughter were with me when I was diagnosed and told that I had cancer and it was not curable. I cried and said I dont want to die. In a short time we put it in Gods hands prayed and got a second opinion that was the same as the first. We decided that we would beat this disease. I made it my prime goal. You need each others love and together you will beat it. Make plans for your future together. Keep very positive and keep in touch with people like Plymouthean, Reinstones and others. People here will give you that little boost that we all need from time to time. A good book that you can read on line that is great guide for cancer recovery is Fighting Cancer. You can have them send you a free copy. The website is: http://www.blochcancer.org/fighting/fightcan.html

Go to this web site. You can select any chapter from the top of the screen. You can print out the entire book or get a free copy sent to you by clicking on How to get a copy to the left of the screen. This is a great book. I did not read it till after I went into remission, but I had done just about everything that is recommended in the book. You can go to their home page by clicking on R. A. Bloch Cancer Foundation at the left this man was given a few weeks to live in 1980. He died of heart problem in 2004. He started HR Bloch.
Keep in touch, and keep us posted.

polean
Posts: 2
Joined: Jul 2006

Hi Lauri, my 44 year old husband was just diagnosed on June 19th, with stage 4 lung cancer (addenocarcinoma NSCLC), he did his first chemo on the 28th of June and to date he is doing very well. I know what you mean about the head spinning off the shoulders. When we first found out it was cancer (just not what type)June 5th, I thought I would die. I reached out to family and all I got there was that I needed to be strong. Bullshit! I was losing my husband and my life! But, I did stay strong until the final diagnosis and then I crashed. I had a major panic attack and ended up in the psych office. The moral to my story is: get the support you need! Don't let other's tell you how you have to be. We are all unique in how we handle crisis. Everybody says be strong for the one diagnosed, but I had to crash and burn before my strengths could be tapped into. I am a strong woman and there is no shame in getting the help we all need to support each other.
Ask your doctor's everything you can. Compazine has worked great on the nausea.

Ree5558's picture
Ree5558
Posts: 21
Joined: Jun 2006

Hello Lauri,
My name is Jaree. I am 47 years old. In Feb., 2006 I was diagnosed with Stage3B NSCLC. I did have surgery. I also had 4 -5 hour chemo treatments of carboplatin and Taxol. Yesterday I had my first Pet Scan since surgery. Cancer free. It is 100% normal to be afraid, to not know what to say to loved ones. Sometimes it helped when my husband and I said nothing, just held each other. We have been married for 31 years and I know that he didn't know exactly what to do or say, but he was there. Like the advice before, just tell him that you love him and let him know how happy you are that you have him there. I think sometimes a spouse may feel leftout and they don't know what to do. Just let him know having his love is the most important thing. I will keep you in my prayers.Visit my webpage, Footprints, if you get a chance................Jaree

lcartier
Posts: 9
Joined: Jul 2006

Jaree - how wonderful for your news!!!!! I know what it would mean to me to even have surgery as an option. I wish you CONTINUED wellness and wholeness! I am so happy for you. Keep in touch -- I expect to hear more of those grand reports!!
Lauri

lcartier
Posts: 9
Joined: Jul 2006

Jaree - bravo!!!! How wonderful for you! I only wish surgery was an option available to me, but, hearing of your success so far, warms my heart! I expect to hear countless notes from you on your continued wellness and wholeness! I am very proud and happy for you. Warm smile - Lauri

emmaloveanna's picture
emmaloveanna
Posts: 3
Joined: Aug 2006

Hello, I am new to this but I was wondering about your story, you say you had stage 3b NSCLC? That is what my mother has and I was wondering how big was your tumor and did you have fluid? or what? How long did you do chemo? How did you handle it? My mother starts chemo tomorrow, friday. She sounds alot like you married 30 yrs. smoked 34 years, but she has alot of pain and swelling and fluid. Her tumor is 10cm (4in) Thank you for anything you can offer me. I am scared and I guess I am just trying to understand this. Thanks Yvonne

Ree5558's picture
Ree5558
Posts: 21
Joined: Jun 2006

In reading some of the messages I noted that so many suffer from nausea during treatment. I had 4 rounds of Taxol / Carboplatin. About 3 - 4 days after my first treatment I had sever nausea. My sense of smell was so sensitive I couln't even eat a popsicle because the smell made me so sick. I was in bed for 3 days so sick I wasn't sure I would get through it. My next treatment my doctor prescribed Emend. It is designed to PREVENT nausea, not help it. You take 1 pill one hour prior to treatment, 1 a day for the next two days. I could not believe the difference. For me it was a miracle drug. No nausea, no sensitive smell , it was all gone. Because it was such a tremendous aid to me I wanted to share.Instead of losing weight, as my doctors were concerned about, I gained 18 lbs because the Emend allowed me to eat and the steroids kept telling me I was hungry. Hope this can be helpful to someone.

dreamer925
Posts: 19
Joined: Oct 2005

Laurie - You are a warm, compassionate and strong person. Yes, I can see that just by your message. While you are facing a very hard period in your life, you do have support here. My prayers and thoughts are with you. May you be strong and keep your sense of humor.
God Bless you and you can email me anytime. I will respond.
Ask me anything if you need to, I will be honest and try to help you if needed.

lcartier
Posts: 9
Joined: Jul 2006

dreamer - here's my little bit os "Sassy" for today . . . when my hair falls out, I'm going to get a little pink baseball cap that reads, "it's cancer, not a bad hair day" -- that oughtta set 'em all straight, quit the looks . . . what do you think? I just think it is an off-the-cuff sassy thing to do, a bit of irreverant humor thay may give me an upper edge.

Another bit of humor -- I have gained 6 pounds since this debacle started -- I made a comment this morning at radiation that "this lung cancer weight loss program just wan't working out" -- the poor technician looked at me like I was nuts. Just trying to keep a little levity . . . but, I'd guess I'd better be careful not offend people.

Hope everyone is having an okay day. I'm a little stiff and sore today (2 days post first chemo), so, just resting today. But, I'm sending a smile to everyone -- just smile back and I'll feel it.
Lauri

MOLSON
Posts: 1
Joined: Jul 2006

Hi Lauri,

My mother was diagnosed today with stage 4 adenocarinoma of the lung. I was with her as the the dr. reviewed the stats. No cure-I can't think that way. I am scared for her. I know that I must be positive, I have to. So I empathize with you and your family. I can only look to all of your replies and stories for hope. All I can do is look for those going through this and those that have survived. I would like to be part of this in any way I can. Mostly, to learn and help my mom get through this. I can't think any other way.

Melanie

lcartier
Posts: 9
Joined: Jul 2006

Thank you to everyone, kindly, for the thoughts and input. Had my first chemo this morning (Taxol and Carbo) - not as bad as I thought it would be, but, the day is still young.

You all have valid points about the situation between myself and my dear husband. While I am certainly not a "guilt hound," there is something to be said for having the responsibility of making this large a change in another person's life, so, yes, it is difficult in that regard. We are, in fact, quasi-newlyweds (married last August) - it is difficult and saddening to realize that the love and life you promised to share with each other may not include those plans, dreams and exchanges you planned on. I am very realistic when it comes to my disease - I will undergo my suggested treatment, but will also keep a sharp eye on quality-of-life vs. round after round of treatment. I also have a daughter of nearly 10 years old that needs me -- and needs me AWAKE and not doped on endless pain medications. So, I will make those decisions as I am faced with them.
My best wishes to all who are involved in this fight . . . As the only daughter in my family, I was durectly involved in the colon-mets-liver cancer death of my loving mother in 1994 and the meyolodysplastic anemia death of my father in 1998. None of this is new to me, other than, this time, it is my name at the top of the chart. It's tough being the one to ask for help or need help -- and sometimes afraid it won't come or how to accept it. I do appreciate your understanding and kind thoughts.

Now - who has a suggestion on how to get that Taxol "treebark" taste out of their mouth? I can taste it already?

Another day with you --
Lauri

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

I had the same kind of chemo. The tree bark taste I do not recall hearing about. I think one of the best things I did was drink plenty of water, along with the other things I took and did. I think some supplements can help with the side effects. I had no side effects at all from the chemo other than a slight numbness in my left hand that built up from the Taxol. This is getting less and less each day. Let me know if I can give you any info on my supplements.

Kerstin
Posts: 9
Joined: Apr 2006

Hi Laurie,
I have been fighting limited SCLC since MArch of this year, it has been a rollercoaster ride, I am 42 with 2 wonderful boys, 15 and 13.
Ask all the questions you can, cry if you need 2, and pray, be strong, I know it so hard to be positive all the time.
I just finished my 35 Radiation treatments yesterday, and I have 2 more rounds of Chemo to do, you have to believe , fight for your daughter.
This is something that can be beat...all the best, feel free to e mail me...Kerstin

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