Sensitive Topic / How Long Was It, Before A Loved One With Esclc, Has Passed On?

Hey Ya'll,

I realize that this topic is a very sensitive, personal, and uncomfortable one for most people to talk about.  For that reason, I'd like to apologize for even bringing it up, to those of ya'all that would rather not want to discuss or remember it all. My intent here is, to ascertain any information on this topic, in which to help myself, in  to trying to put some type of statistical time line aspect to it all. I also know that everyone is a unique individual person, in how they and their bodies reacted to this horrible monster of a disease. I would like to share with you my personal journey in my battle against my cancer. By the way, I just turned 56 years youngin May of 2008. I am divorced and have two adult children. My oldest child, Jason, resides here at home with me, thank God. He is 26 years young. My 22 yr. young daughter lives with a roommate. Even though she lives not fat from me, I don't get to see her much. She is tired after working and has her friends that she goes out with. I understand that she needs a life of her own. I try not to hold this against her. But, I do feel that she could visit with me at least once a week. But, hey. She's young.

My cancer was found out, during a stay in a hospital here, for pneumonia. This was in the middle of, Dec. 07'. An appointment was made for me, with a good pulmonary Dr. I had a huge test done on me there. To see how much lung capacity I had. It tuned out I have only 35% lung capacity. I was put on oxygen.This is for me to use 24/7. Yes, I was frequently out of breathe, prior to my being hospitalized.

I had even passed out in my car for 9 hours. I had driven my son to his job, (5 minutes away) pulled into my driveway at home, turned the car off, and then passed out. My lung had collapsed. This meant of course, another hospital emergency for myself. It was touch and go there for me. My oxygen levels had to be brought up for me. They put a port in me while I was out and had given me my first chemo session while I was still out, too.  

This pulmonary doctor, had an x-ray made of my chest. He spoted a dark spot in the back region of my lung. He did that out patient bronchioscope procedure  on me. My children and I went into see this Dr., after he obtained the results of that scope  procedure. We were told that I have emphysema and it was malignant.Talk about taken back. But, I had been a smoker for over 40 years. Even though this Dr. told us that other factors can and do cause this type of cancer. I mean, later..when we found out what type of cancer I had.

I was sent that day to see my now cancer doctor. She set up  CT/PET scans for me to do. This way of course, she could find out exactly what type of cancer I had, and then know how to treat me and it. The test results we found out were not good.  I was told I had small cell lung cancer, witch had already mest. to my liver and bones. I was considered at a stage 4 cancer patient. Chemo treatments were set up for me, straight away.

I also have a few under line health diseases besides cancer. Such as: Severe RA, (rheumatoid arthritis) fibromyagia, insulin diabetic, poly neuropathy, arthritis in my back and hips, and a pinched nerve, in my lower back region.  I have several stays in the hospital, too.  

I finished my 4 rounds or complete chemo sessions. Then, I went to have more scans done. My doctor said it was remarkable, and that the cancer cell in my right lower lung had decreased a ton, and the same went for the cancer cells in my liver and lungs. No further cancer cell aggression was seen from the scans. So, I am sort of in what is called a remission state for now. Which is GREAT, for sure. But, my Dr. wanted me to play it on the safe side and receive 2 more chemo therapy sessions. Which I did. I am to begin taking chemo pills, Etopside, after what I am typing to ya'all below happens with me.

I am in a standing mode for now. Reason being is, I found out that I have cataracts in both my eyes. I am to have one eye operated on, on June 3rd. My Dr. said to me, "There is a small chance of your white blood and red blood cell counts going down, during this eye surgery you'll be having. Therefore, let us hold off taking the Etopside pills for now. Just until after this surgery is done." I said that was fine. However, I am wondering if my being off any type of chemo, as far as I have been off them, will cause my cancer cells to reappear on me. I didn't think to ask the good doctor this question back when I saw her. I shall call her today and ask it to her.

I feel ok. Except for my throat feeling weird like. And, I have been having slight, upper back pains and the same type of pain in between my breast. I reckon that is my normal cancer pain. I'll ask her about that, too. I mean, while I have her on the phone today, This brings me up to today, May 29, 2008.

I have been to as many cancer boards as I can find on the Internet. I am trying to find out what my odds might be at this stage of my treatment, etc. Now, I do not believe that 'any human being,' especially us cancer patients, have an expiration date stamped on us. I do believe in miracles and I will continue to have tons of hope for myself. I am committed to fight this poison inside of me. But, there is a part of me, that desires to be better informed, on this topic I have presented to all of ya'all. Like I stated way up at the beginning of this small book to ya'all. Please, forgive me, if I have offended anyone at all, by asking the question I have to ya'all.

I so appreciate any and all information, that any of ya'all, may be willing to share with me, here. God Bless and look over each of ya'all and your loved ones. I wish ya'all less pain today, than ya'all had yesterday. Gentle hugs to all of ya'all.

My Best to All of Ya'all,

Rosie

Savannah, GA.

 

Hi Rosie -- I run a local cancer support group and have had a lady join us who is currently undergoing assessment for small cell lung cancer.  Your letter is very comprehensive and I intend to print it and give it to her in the hope that it may give her hope.  She is seeing the oncologist in a couple of days and then she will be given her options, and we'll know what meds she decides on using.  She has been told that she can't have radiation because of spots on her hip and adrenal gland so I'm assuming that she will be offered some sort of chemo.  Any advice that you can offer will be gratefully appreciated as we don't have much experience with lung cancer.  Many thanks, Cath

Hi Rosie,

Sorry you are going through this.

This is my mom's story and mine too.

My mom was diagnosed with small cell lung cancer in March of 2006. She originally found out because she was having severe back pain, she went to the ER they took a x-ray and told her she had a broken vertebra in her lower back...as they were sending her home (yes they sent her home with a broken back) the nurse comes out and says "By the way you have a spot on your lung that showed up in the x-ray the doctor wants you to go to your doctor and get a cat scan."

When my mom told me that I had a gut wrenching feeling inside that it was cancer, her father died of the same thing at the same age.

My mom got the CAT scan and needless to say she was in the final stage of SCLC. The cancer had eaten away her entire vertebra, it was also in her liver and spleen.

The doctors weren't even going to fix her back to rid her of that pain because they basically thought of her as a lost cause. I said HE** no you are going to fix her back because even if she only has one day left she deserves to live it pain free.

The pain she was in couldn't even be tamed by the strongest narcotics..either by pill or injection.

The did the surgery and she was so happy...she had been in such terrible pain for so long she was just happy to feel some relief.

The doctors came to her and gave her two options...one you can do chemo and you may have 6 months to 12 at the most or you can do nothing and you will be dea within two to three weeks.

I thought the way they told her that was the most unprofessional uncaring thing I had ever heard in my life. Of course she chose treatment.

She fought very hard and took alot of chemo, in my moms case though she had some bad reactions to the chemo and missed a few chemo treatments which I believe ultimately caused her cancer to start spreading and once it got out of control the doctor said chemo wouldn't do any good. 

The doctor said she could either go back home or go into hospice, my mom chose hospice because she at the time was living with me and my husband and two kids and she didn't want them to witness her death.

My mom went into hospice on a Wed and died on Saturday May 19, 2007...all within three days.

I can tell you that before she passed she was having a very hard time catching her breath and that was before the doctor had done new scans and had decided to stop her chemo treatments.

I knew when her breathing got so bad that she was close to dying, which from the time her breathing got bad until she died was about two to three weeks. I felt so badly for her and sometimes it is so hard just to remember the healthy mom I had before the cancer came.  

Everyone's case differs im sure and im sorry if I was too blunt but I really wish someone had explained to me what all would or could happen....it might have helped some.

God bless you and I hope and PRAY you beat this!!!!!!!!!!!!!!!!!!!!!!

Sandy

 

 

On 6/9/2008 Saber92973 wrote:

Hi Rosie,

Sorry you are going through this.

This is my mom's story and mine too.

My mom was diagnosed with small cell lung cancer in March of 2006. She originally found out because she was having severe back pain, she went to the ER they took a x-ray and told her she had a broken vertebra in her lower back...as they were sending her home (yes they sent her home with a broken back) the nurse comes out and says "By the way you have a spot on your lung that showed up in the x-ray the doctor wants you to go to your doctor and get a cat scan."

When my mom told me that I had a gut wrenching feeling inside that it was cancer, her father died of the same thing at the same age.

My mom got the CAT scan and needless to say she was in the final stage of SCLC. The cancer had eaten away her entire vertebra, it was also in her liver and spleen.

The doctors weren't even going to fix her back to rid her of that pain because they basically thought of her as a lost cause. I said HE** no you are going to fix her back because even if she only has one day left she deserves to live it pain free.

The pain she was in couldn't even be tamed by the strongest narcotics..either by pill or injection.

The did the surgery and she was so happy...she had been in such terrible pain for so long she was just happy to feel some relief.

The doctors came to her and gave her two options...one you can do chemo and you may have 6 months to 12 at the most or you can do nothing and you will be dea within two to three weeks.

I thought the way they told her that was the most unprofessional uncaring thing I had ever heard in my life. Of course she chose treatment.

She fought very hard and took alot of chemo, in my moms case though she had some bad reactions to the chemo and missed a few chemo treatments which I believe ultimately caused her cancer to start spreading and once it got out of control the doctor said chemo wouldn't do any good. 

The doctor said she could either go back home or go into hospice, my mom chose hospice because she at the time was living with me and my husband and two kids and she didn't want them to witness her death.

My mom went into hospice on a Wed and died on Saturday May 19, 2007...all within three days.

I can tell you that before she passed she was having a very hard time catching her breath and that was before the doctor had done new scans and had decided to stop her chemo treatments.

I knew when her breathing got so bad that she was close to dying, which from the time her breathing got bad until she died was about two to three weeks. I felt so badly for her and sometimes it is so hard just to remember the healthy mom I had before the cancer came.  

Everyone's case differs im sure and im sorry if I was too blunt but I really wish someone had explained to me what all would or could happen....it might have helped some.

God bless you and I hope and PRAY you beat this!!!!!!!!!!!!!!!!!!!!!!

Sandy

 

Dear Sandy,

I want to say first off, “I am so sorry for your great loss, dear. I know it couldn’t have been easy for you to bring this all back.  Thank you so much for sharing your story with me. You sure have helped me a lot. I thank you kindly for that as well, Sandy.

 I must say, that I know whom  you got your bravery from. I can see how your dear mother fought as hard as she could, to beat this monestrous disease, that finally took her from you. I could feel the love that your mother had for you and her grandchildren.  Her wishing to go to Hospice, was done with love in her heart,  for all of ya’all.  This is what I desire to do as well. I sure don’t want my son, ( whom lives with me) and nor my daughter, to have me pass away at home. It is going to be hard enough on them both,  as it is. As I said before, “The hardest part of it all will be for me, in having to leave my kids alone.”  I’m sure it was for your mother as well. How could it not be?  You’re a mother. You knew exactly where she was coming from.  Bless her and your hearts.

I am thinking that perhaps your mother had this for some time, before she was finally Dx with it. Is this your way of thinking, too?  But, for those dummies at the ER room. What morons they were. Then, how that doctor came out and told ya’all about the two choices your mother had. Well, I would have been tempted in reporting his sorry behind. I can understand though. All that was on your mind was, in getting the proper help for your mother.

I am so proud of you, (as I am sure your mother was) for not allowing them to get away with ‘not’ doing your mother’s surgery. Good for you!  I know she must have been so happy, to finally be free from that pain. You did real good, hon.

I need to ask you this, if I may, Sandy.  You said your mother had a hard time breathing. I have heard this from other care givers. I mean, right before their loved one passed away. My question to you is this.  Was your mother put on oxygen, way before it got real bad on her to breathe?  I ask this because, I am on it 24/7. But, I also have emphysema, and only 35% lung capacity.  I was just wondering about oxygen and your mother, dear.

Don’t you even dare try and apologize for being blunt, as you put it.  I don’t feel as if you were that way, anyway.  Besides, I want the truth. I am sure you understand this. So, don’t you worry about that in the least, dear.  I can’t tell you how much I appreciated you doing this for me. You are such a sweat heart, Sandy.  Rest assured.  You will see your mother again.  I truly believe that our spirits look down upon our loved ones, after we have passed on. I know I plan on doing so with my kids. There’s no way I plan on missing out on how their lives turn out. Besides, who would ever look over and keep them as safe as their mother would. So, they best watch themselves.   ;)  

Thank you again for your help,  and sharing such a personal, sad  time in your life with me, Sandy.  You keep thinking about all the good times that you and your mother had together. I’m sure she is. Big, gentle hugs to you.  May God Bless and watch over you and your loved ones. Take care sweetie. I am so proud to have met you, via this medium. I look forward in us conversing again.  Take care.

Love Ya,

Rosie

Savannah, GA.

 

 

On 6/8/2008 poppy/cath wrote:

Hi Rosie -- I run a local cancer support group and have had a lady join us who is currently undergoing assessment for small cell lung cancer.  Your letter is very comprehensive and I intend to print it and give it to her in the hope that it may give her hope.  She is seeing the oncologist in a couple of days and then she will be given her options, and we'll know what meds she decides on using.  She has been told that she can't have radiation because of spots on her hip and adrenal gland so I'm assuming that she will be offered some sort of chemo.  Any advice that you can offer will be gratefully appreciated as we don't have much experience with lung cancer.  Many thanks, Cath

Hey Cath,

Thank you for your post. I don't know if i can help your friend much. However, I can only inform ya'all of how my chemo went with me. I hope that eases her mind a bit. by the way. Thank you for your kind words about me, too. You're a sweetie to say what all you did,  about me and my writing.

First off. Is your friends  SCLC extensive or limited? The two are treated differently, dear. Extended means, has spread outside the main cancer source. This is what I have. Mine had already mets.. From my lung, to my liver and to my bones.

I had  what is called a 'port' put into my upper chest area. This is where the IV needles will go into. Believe me. This sure saves ones veins. Each IV bag needle will be inserted into the port. It's a breeze then, in taking ones chemo sessions.

Make sure that your friend gets a script for nausea, just incase. As a matter of fact. During my last chemo therapy, I was given a chance to try this new IV drug for nausea. It is supposed to work for 5 days. Well, this stuff is wonderful. I never even felt nauseated at all, way pass 5 days. It begins with an, 'A.' is all I can remember. I am sure the nurse there will know of it. I bet they use it, too. Have her by all means use it.

 My hair started coming out during only my 2nd. chemo session. I went ahead and cut it real short. I haven't lost all of my hair as of yet. Oh, let us not forget the 'fatigue'  that more times than not will hit your friend like gang busters, during her days on chemo. Just tell her to take naps and go with it. She'll be fine. Other than that. I did fine with all my chemo sessions. I hope she does as well.

My first CT/PET scans showed a great reduction of my cancer cells, and no new ones growing. That's great news, I know. However, it can come back again. I know this,. too.

After those scans were read to me, my Dr. wanted me to do two more chemo treatments, to make sure was all. So, I really did 6 chemo treatments. I am to go on a chemo pill now. Except, I am trying to get a break on the price of it. My co-pay through Medicare Part D plan would be like, $170. Which, is not bad, for a chemo pill prescription that retails for $1,000. You see my point, now?

I just had cataract surgery last Tuesday. I was to wait until after the surgery to begin these pills. But, I am to have my other eye done soon, too.  I'm not sure what we'll do about that, yet.

What worried me is this. It has been well over a  month, since I have had any kind of chemo. I am anxious over this. Meaning, will all the good that the chemo sessions have done for me, go to the wayside? Will my cancer cells start growing and spreading again? This is what I pray doesn't happen to me. I am to call the doctor's office tomorrow. One of their insurance ladies is looking into some kind of help for me on this. I sure hope it works out fine for me.  

That's about all I have to say for now, Cath. I am in a holding mode for now. I hope they hurry up and are able to help me get that chemo med. 

You take care. Tell your friend to think positively. Chemo is not bad at all.  Remember now. We are all different, on how we respond to meds and the like. That would be true with taking chemo therapy as well, no doubt.

Ya'all hang in there and keep the faith. Here is wishing you and your friend good health and love. Take care. Gentle hugs to both of ya'all.

 

Love Ya'all,

Rosie

Savannah, GA. 

 

 

Thanks for such a comprehensive report Rosie -- I'll print this one off too and I'm sure that it will help!!  many, many thanks,  Cath

Dear Cath,

 

You're most welcome, friend. You and your friend take it easy, now. Ya hear?  I'm glad I was of help to your friend. Tell her I said, "Hey."

Be safe and take care. Hugs.

 

My Best to You,

Rosie- Savannah, Ga.  

Rosie,

First of all thank you for giving me a little of my Southern charm back in my life. It's been a long time since I heard ya'all. I'm originally from Oklahoma but my husband's military career has sent us to San Diego for the past seventeen years. I miss home and all the wonderful southern hospitality. Well, I guess I better tell you my story and I'll try to help if I can . My Father died four years ago to leukemia which is much different to your cancer but he did have the breathing problems. They discovered tumors in his lungs during the course of his treatment. He too had 35% capacity in his lung and they did not want to do any surgery due to his leukemia. He was extremely weak and a skelton of a man over the course of only seven months from start to finish. My Dad had a bone marrow transplant in October and was in remission within a few weeks. My uncle, Dad's brother was a match and quite willing to save his brothers life, however the week of Christmas Dad had a terrible headache and he was slurring his words. My Mom rushed him to the ER, which they sat for four hours before a doctor saw him, can you believe that a cancer patient with a possiblity of a stroke had to wait four hours just to be seen. My Mom was frantic and she couldn't get anyone to help her. She called me in a frantic and I was immediately on the phone to his doctor. He was seen less than five minutes after my phone call. I just don't see how a hospital could be so incompendent. Well, by the time he was seen it was too late for them to reverse the stroke and he was admitted. My Father became worse as the days pasted. I flew out immediately and he didn't even resemble my Father. I had only seen him four weeks prior and he was looking so good after the trasplant. When I first saw him his left eye was bulging, he wore an eye patch. I asked my Mother what was wrong with his eye and she said the doctors can't figure out why his eye was bulging. I asked if he had a CT scan but she said they wwere planning on doing one later that day. I'm no doctor but wouldn't you of done that right away when the problem presented itself. So, later that day Dad went down to get his scan, my father had another stroke while in xray and when they brought him back to the room he was in a coma where he would remain for the next 48 hours. He was transferred over to the IC unit and could not breath on his own. He was placed on life support and a wire was drilled into his brain to monitor swelling. The next day they did a brain wave check and he was declared brain dead. My Mother was devasted, we had to convince her to take him off life support and on Christmas morning Dad passed away. We had an autospy done to find out the cause and we learned it was due to the bone marrow transplant and the drugs Dad had to take to prevent his body from rejecting the bone marrow. Dad had a rare condition that caused a fast acting tumor to grow in the roof of his mouth and it travels rapidly, less than 48 hours from there to the sinus cavity, then to the eye socket, that is why his eye was bulging, to the final resting spot the brain. had they of done the scan at the first sign of his eye bulging they could of removed the tumor and stopped it in it's path. So the bottom line is you need to be in charge of your care and demand that you be heard. If you feel there is a problem in how you are being treated stand up and shout it if you have to. Sometimes doctors just don't listen, but you know your body better than anyone and you know when something isn't right. I would ask as many questions as you can, expect to be treated as a queen and if you don't get treated that way find another doctor. There are all kinds of wonderful cancer centers out there and wonderful doctors that listen to their patients. I too have cancer now and the experience I had with Dad only made me stronger and smarter in the regards to my health. I listened to that little voice inside that said there's something wrong. I was diagnosed in April of this year with stage 3 colon cancer. I had four doctors that looked at my tumor after my first surgery and said I don't think it is cancer but let's wait until the pathology report comes back. One week later I got a call, yes a call isn't that a little unethical, that I had cancer. I was all alone, my children we're in school, my husband at work and me all alone with the news I had cancer. I would of perferred a doctor to tell it to my face so I could of had my husband as my support be by my side and hold my hand as we learned the news. It's devasting however you learn you have cancer. By the way my uncle who gave my dad the bone marrow was diagnosed with colon cancer six months after Dad died. He is now battling his second occurance to cancer, now in his liver and lungs. I feel for him. he so generously tried to save Dad from this horrible disease and now he faces the same delimma. My dad would surely want to help him now if he could. Cancer runs deep in our family, we have lost eleven family members in thirteen years to cancer. I am currently having genetic testing done with the Mayo Clinic to see if I have a heritary mutated gene that causes cancer. It may not save me but it will my children if the test is positive they can be tested for the same gene and can hopefully eliminate this from happening to them. I'm still young, 45 and I look forward to all the things a Mother looks forward to graduations, weddings, grandchildren etc.. I'm sure you too dream of these things. My girls are 24, 20, and 16, they have been struggling with the possiblity of losing their Mother. We are a tight family and we depend on each other being there for each other. My oldest moved back home after my diagnosis. She is a trained nurse in caring for patients in their homes after surgery that don't have family to care for them. So she will be a great help to me when I have come home from my second surgery in a couple of weeks. My 20 year old is home from college and she helps me a lot too with appointments and such. My youngest is struggling right now because I am her rock and now she feels treatened with the possiblity of me not being around for all the things we dream about. My husband has been strong and the Navy has been wonderful with allowing him time off. Well, I don't know if I helped you but you helped me get a lot of my chest by reading your story and thank you again for bringing a little of home back to me. Us southern girls have to stick together right. Do take this advice research as much as you can, write down questions for your doctor, have someone go with you to your appointsments if you can as support, never give up hope, and lastely if you feel you're not getting the answers you want seek a second opinion. I wish you luck in your journey and if you ever want to talk just let me know and I will send you a private message with my contact info. Take care.

 

God Bless, Sheryl

Hey Sheryl,

 

I just sent you a private letter. Look for it, please. I shall be on the look out for a response from you. No big hurry. Whenever you have time to do that, will be fine with me.  Take care, friend. Hugs.

 

Love Ya,

Rosie

Savannah, GA.