CamperJones

With a very heavy heart, I wanted to let everyone know that my best friend - my Mom - who started her brave battle with SCLC April 3, 2003 went home to be with the Lord Thursday, Sept 18th. She was an incredibly brave and grace filled lady who gave it her very best. She wanted me to thank everyone for their prayers and encouragement during her many battles and to tell everyone to NEVER give up hope! God Bless you all!

Shelly - Since this April my Mom was diagnosed with SCLC, two weeks later coded TWICE on my living room floor because of lack of oxygen, developed Nocardia (a VERY rare lung infection) and while in hospital had a stroke and seizures. She is having 32 radiation treatments and except for 10 days has been in the hospital, ICU, CCU, Rehab since April 3rd. She lives with me and my husband as well as my mother in law here in my home. She finally came home June 30th from the hospital using a walker and wheel chair and has 8 more radiation treatments left to go! I understand completely your rage as I have felt it as well and the wonderful folks here understood. Cancer has taken your control away and you are now at IT'S beck and call. You are no longer proactive now you are reactive. You sound like me in that you see a problem and tackle it head on until it is solved and then move on to the next. Cancer doesn't like folks like us and we don't like it either. So, we beg God to fix the situation that we cannot fix and when it doesn't seem like He is doing the job we get angry and take over for Him because that is how we are - we are fixers. Mom's short but intense journey down this road of Cancer has been quite a journey for me. I cannot imagine my life without her and I was quite mad that God picked such a wonderful, loving, caring person like her to have cancer when there are so many better choices He could have made (like Sadam, etc). However, no matter how much my heart broke or my anger rose it didn't change the fact that my Mom has cancer. So, I made up my mind that I wouldn't waste one minute more raging at God over this or crying my heart out because that was time that could be better spent loving her and caring for her needs. I rolled up my sleeves, armed myself with information from here and other sites and funneled that anger into helping her learn more about her cancer and what can help her deal with her situation. For example - I learned that more cancer patients die from malnutrition than the actual disease so I made it a point to find healthy good food for her to eat. I TOOK BACK my life and hers from the cancer and now feel more in control than ever since she first was diagnosed. I know that God loves my Mom and me and while no one is promised tomorrow He has given us time to be together and to draw closer due to her cancer not inspite of it. So, I hope it helps you to know that we all have many emotions that we have felt but remember that your Mom is still here and probably would love you to hold her hand and just "be". You cannot fix this for her or yourself but you can take back control of the things you CAN control. Start there and soon you will start feeling stronger and more able to deal with it and she will become stronger through you. God is able to see you through this because He is able and SO ARE YOU! God Bless you, Linda

It has been a while since I've posted but wanted to let everyone know what a fighter my Mom is at 71! She is now in the rehab unit of the hospital and has walked over 40ft and is steady getting stronger. She is on number 13 of 20 Radiation treatments while they are treating the Norcardia (lung infection) and the Infectious Dr says he needs 30 days on the mega doses of the Bactrim to get a handle on the infection before resuming the Chemo hence the radiation. She did suffer a very strange stroke two weeks ago that they said acted like a "focal seizure" but they did an MRI of her brain and spine concluding that the lesion in her brain was NOT SCLC but evidence of a mild stroke. She is now on blood thinners and still on 4ltrs of oxygen but she is bound and determined that she is going to be coming home this time walking and able to start her Chemo. What a fighter! Her doctors find her to be quite the miracle considering all that she has been through and she never hesitates to tell them who is in charge of her life and that is why she is still here (drives them nuts - LOL!) She said to tell everyone here to not give up hope and to enjoy each day for what it is and let tomorrow tend to itself. Hugs, Linda

Hi everyone! Hope today finds you all doing well and keeping the faith! Mom is home here and my living room now looks like a fancy hospital room and she is very happy! She is eating better but hasn't been strong enough to get out of the hospital bed but P/T, O/T and Home Health Care is coming out soon so they will be helping her get out of bed and on her feet. We have some real challenges changing bed linens, baths, bed pans, vitals, breathing treatments, oxygen masks and canulas and but love conquers all and we are making it work. So....here is the problem that I need help with....my poor Mom hasn't been able to wash her hair for quite a while and it is falling out faster than I can brush it due to just her ONE chemo session. Does anyone have any suggestions to give me to do her hair while in bed and in your opinion will all of her hair fall out soon or just in hunks? I want her to feel good about herself and have made her pretty gowns that are easy to get in and out of as well as using the bed pan but her hair has me stumped! God has given us all a real peace so we are enjoying it to the max to make her happy. She said for me to tell everyone that she so appreciated everyone's encouragement to me and our family but most of all your prayers! Hugs, Linda

Hi everyone! Mom is now off the vent and in her own room and NOT in ICU! Her doctors all say she is their "little miracle" but we here all know that she is "God's Miracle!" Her throat is very sore and she talks with a deep garbled voice but her mind is coming out of the fog that her V-Tac put her into. The Chemo is on hold for a while until she is strong enough to continue her treatments. Her doctors are going to put her on an antidepressant as they say after a "sudden death" event that this happens. Mom knows she had a "slight heart attack" which is what they are calling this even though her heart stopped. The reason being is that her heart had very little damage (another miracle) and that there was NO brain damage (one more miracle)! Thank you for your prayers and support as each day that she is here with us is so precious and He is listening! Have a great day and hugs to everyone!

As you know my Mom is in ICU on a Vent and I threw a real fit in the ICU waiting room about why I am getting so many conflicting opinions and low and behold my pastor found this wonderful woman who is an RN (Patient Outcome Counsler) who came and in sat with me and heard from me all the things that I posted earlier that all the various doctors told us in the ER about Mom and then she quietly told me about her Mom's brave fight with Lung Cancer so I knew she understood. Then she contacted my Mom's Internist and arranged a meeting with him for the family to condense all the test results and give all of us straight answers about her diagnosis and prognosis. Well we had the meeting today and heard that her EEG showed NO signs of brain damage due to her V-Tac (when her heart stopped twice here at the house) and that she is now coming out of the coma and is totally responsive to commands. She will be on the Vent for about 7 more days as they ween her off as she continues to breathe on her own. They still are not sure WHY her heart stopped as they can only conclude that due to her age, smoking, cancer and stress of the chemo that her oxygen demand was not being met. She will probably get a trach tube for breathing and once she is stronger and off the antibiotics for her non-TB lung infection she should be strong enough to continue her Chemo. If she doesn't do the Chemo she will probably only have about 6 months but they give her up to 3 years with it. SCLC limited seems to respond quickly to this particular regime and she can do well with it. I am so happy to know that she could be with us for a time longer than what we were initially told and I feel so blessed that she is alive! Of course that surely doesn't change the fact that she has cancer and at 71 she is not in the best age group for continued remission. But, I am so very glad that she will now have a chance and that is answered prayer in my book. She is aware of why she is in ICU and is certainly not liking her Vent but I try to smooth it over with her and console her that she is daily getting better. Maybe those that don't have SCLC would think that this is bleak but for our family it is precious to know that we will have her with us longer than we first thought. I know that God is a God of miracles and for us she is HIS miracle by just surviving this long and getting stronger. Thanks for all of your prayers and PLEASE keep them coming as He is so faithful and He does listen! And I pray for all of you also that you will have your own miracles no matter how small they may seem - they are precious indeed! Hugs, Linda

After two weeks in the hospital it was determined that my Mom did NOT have TB but a lung infection that could be handled with anitbiotics. She was in great spirits and I took her home. She came into the house and I got her settled into her recliner and walked over to the TV and when I turned around her eyes were rolled back into her head and she was gasping for breath. I yelled for my husband to call 911 and they had to shock her twice to get a heartbeat. Now I just left her in ICU on a vent and she can see me and squeeze my hand as tears roll down her cheeks. She is so scared and I cannot stop crying but I don't cry in front of her. The Trauma nurse down in the ER asked us if we were putting her on DNR and we said yes. She then turned around and asked us why then did we call 911. The the Pulmonary doctor talked to my brother saying that she had only 3 to 6 months so why are we so surprised this happend. THEN the Neurologist asked me later why I didn't realize or know about "sudden death" with "her type of cancer"! Her Oncologist NEVER NEVER NEVER NEVER said that she only had 3 to 6 months or that she could experience "sudden death". Would someone please tell me WHY WHY WHY didn't I know this? It is killing me that she is now on a Vent and that tomorrow they will be doing a brain wave scan and an MRI to see if she can breathe on her on. I cannot stop crying and I blame myself for doing this to her by calling 911 but I never connected her cancer with her heart stopping and now I cannot imagine what her future will bring. I am so heartbroken and feel totally betrayed by her doctors that they never told me enough. I just wanted to vent here because everyone here would understand my rage over this and my total feeling of failure to help her and how broken my heart is. I promised her that this would never happen and now it has because I DIDN'T KNOW! PLEASE pray for my Mom that she won't suffer anymore........

According to my Mom's Oncologist she does not have ANY mets and that her SCLC is considered limited. Wonder why then that he has her on the Decadron if that is used for mets? The reason he gave for the Decadron was to relax her and to "settle things down" in her tumor as she was bleeding quite badly when she was admitted two weeks ago. They give that to her through her IV every 4 to 6 hours if I remember correctly. Can that also be given orally once she leaves the hospital? Does that sound correct about "settling things down"? I haven't read many things here about anyone with SCLC bleeding like my Mom did. Is the bleeding not common to most with SCLC? Thanks so much for your answers.

Thank you so much! As you know your imagination can take over when facing the unknown! The more I learn the better I can handle this for her and not be worried about the "norms" of Chemo. I have been a nervous nellie over this and the more I learn the better equiped I feel to help her through this. My poor Mom has been such a modest lady all her life and she is keeping her sense of humor about how many have seen her backside that she remarked how glad she was that she always did her "butt exercises" when she was young! See - that is what I was talking about her great spirit about all of this and that "fog" was scarey but now I can just relax a little when she nods off or asks the same questions that she asked previously. Honestly, I don't think I could have gotten this far dealing with her illness without you wonderful folks. Everyone's sharing spirit here while going through their own trials with lung cancer is a true gift from God above! Thanks and God Bless!

My Mom received her first Chemo and along with that she is getting anitbiotics and Decadron. She is now VERY lethargic and barely eats. I have offered to get her ANYTHING she but she says that all her food and drinks are now awful tasting. She used to enjoy coffee and Pepsi but now she HATES it. Before the Chemo she was alert despite everything but since this first Chemo she seems a little confused and catnaps all day long. She seems different and although she is 71 she has a memory like you wouldn't believe before the Chemo and now she is like in a permanent fog and her short term memory is clouded. I wouldn't call it depression because she will interact and talk to you but she acts sleepy all the time. She gets very aggitated with me if I try and ask the doctors questions and if I follow them outside she thinks I am keeping something from her so I am looking to you folks that have gone through this to say if I should expect this or point it out to the doctors. They don't really notice the difference as they don't know her and when they see her early in the morning they are probably just thinking she is just tired from being woke up! Thanks so much for your support and help! Hugs, Linda

They have put my Mom in an Isolation Room due to the fact that she tested positive when they did the lung wash for the bacterium that the TB family is from SO..........now they are waiting to see if she is a host for TB and if she is then the Chemo and Radiation will come to a dead hault and they will have to give her TB drugs for 6 to 9 months! I am so exhausted staying at the hospital and now we have to wear heavy duty THICK special masks until this is ruled out. PLEASE....PLEASE pray that she is negative so we can get on with the Chemo and she doesn't have to wait 6 to 9 months taking TB drugs that are VERY hard on the liver. The doctor point blank told her that "in her condition" that the TB would kill her long before the cancer. She is just so down now and it breaks my heart to see how she has had to deal with SCLC and now this! How did she get it? Well according to her Infectious Disease Doctor lots of healthy folks could have this family of bacteria floating around in us and because it is standard protocol with lung cancer patients that they be tested is the only reason it was found in her. It is just awful how they have to treat her in the hospital and if myself and my Mother-in-law weren't there for her she would be all alone in her room because they have to wear such protective stuff that they find it a "burden" to just check her vitals let alone just pop in to see if she is OK. She is 71 with severe arthritis and getting around is difficult for her as it is and if I am not there she has to buzz the nurse and wait for them to get in their protective garb. If it turns out to be ANYTHING but TB she can be treated with strong antibiotics along with the Chemo. This seems like a dream and I just pray that she is found negative and we can get past this to deal with the SCLC while it is still limited without any mets. Thursday we find out and until then we're just waiting...............Thanks for listening and hugs, Linda

Last night my Mom had her port put in and we are hoping to get to take her home today. The rest of her Chemo will be done at the Oncologist's office as will the Radiation. So, my questions are for those that are caregivers to those that have SCLC to help me prepare the house for her homecoming. How many with SCLC are using Oxygen at home as well as breathing treatments? Is there anything I should know about being extra careful about germs and stuff when Mom comes home? The nurse told us that we will have to be vigilant in keeping people from coming around her unless they wear masks and gloves. That upset Mom as she thinks people will treat her like a leper. What precautions do you suggest or have done while they are on Chemo (while their white count is so low) and if you have any tips that would help make her more comfortable (diet tips, etc) that would also be so appreciated. We are carving out new territory here and want to make it as easy on Mom as possible. It is so nice to have everyone here that really understands what this is all about and has been through what we are getting ready to go through ourselves! Prayers and Hugs......Linda

Hi! My Mom was just diagnosed a few days ago with Limited Small Cell Lung Cancer and what brought her to the emergency room was that she was coughing up a lot of blood. She has no mets that they can find after a complete work-up including Brain CT and Liver Ultrasound. She had her first Chemo last night of Camptosar and Cisplatin. This is her Oncologist's prefered protocol for her type of Lung cancer and this is the Japanese Treatment method that the Harvard Review has recommended. This will be followed up with radiation. She will be having a port put in Tuesday because her Chemo in her poor veins just wouldn't hold up for those 9 hour sessions. I have been reading everyone's posts since she was admitted on Saturday night and have cried so much that I don't think I have many tears left for now. I don't cry in front of Mom as she has such a good spirit about her and she is completely at peace thanks to answered prayer! Both she and my mother-in-law live with myself and husband and the mere thought of losing her has broken my heart but I am really encouraged by your posts here and what her oncologist has said about her protocol of treatment. Where will this take her? I don't know but I do know that everyday counts and that is what we are celebrating - everyday that we have with her! She is so loved by so many people and she herself was a caregiver to her late husband (my stepfather) who died from complications of Non-Hodgkins Lymphoma 5 years ago. She also took care of her best friend who died from Pancreatic Cancer 6 years ago so she knows what this voyage can mean. Good days and bad days but days here with her family and friends - that is what she finds to smile about and I too will pray that I can also put the tears away to enjoy her with us and not to look too far down that road. I will be reading with a hopeful heart all of your messages here and pray that we all can have wonderful things to post in the coming years. All my best and God Bless you all!