Jadedparrot Posted February 23, 2009 Share Posted February 23, 2009 I (Rhonda aka Jadedparrot) am new to the Lung Cancer world and am here to help myself help my mother. She (Sandy) was diagnosed with Stage 2, Adenocarcinoma NSCLC on Feb. 4, 2009. Right now, she is on her 5th day in ICU. They cannot take her tubes out yet as the lung has not sealed. Today was a rough day for all of us. She cried a lot, has a ton of anxiety and stress and more pain as they are turning down the pain numbing drugs in her back tube. The top half of her right lung was removed this past Wednesday, a bit more then they expected to take. She is not expected to need chemo or radiation. As a 45 year smoker, you always think it will happen to someone else. I am her daughter and I have smoked for 30 years, minus a 8 year hiatus stress sent me back to the pack. Mom and I have been quit for 34 days. As bad as everything she has been through, how can we both want a cigarette more then ever? It amazes me how bad this addiction is. Neither of us will smoke again but it sure is testing our will. Especially mine, as I came home for a few minutes and had to find an outlet for help. I googled Lung Cancer support and found myself here. My father has Non-Hodgekins Lymphoma and has heart disease. He has had 3 stents, two defibrillator implants and quad-bypass. He keeps going, thank God. He will start his chemo treatments again in March. We are not supposed to take on more then we can handle. I have surpassed that, especially on a bad day like today. I am 42, an only child, both my parents have severe illness and I have one knot left on my rope. I'm holding on tight. I'm not looking for pity. I just need a place to deal with this. Thanks for having me. Rhonda Quote Link to comment Share on other sites More sharing options...
Patti B Posted February 23, 2009 Share Posted February 23, 2009 Welcome Rhonda- Welcome to this wonderful site altho I am sorry you needed to find us. This site is full of some of the best people who will always be willing to give you information, support, or just let you vent. You are now part of our family. It seems like you have a lot on your plate right now with both of your parents. I cannot imagine doing all that by myself. Thats why its so amazing that with all your stress, you have able to quit smoking - congrats to you. Please let us know more about your mom. I look forward to getting to know you better. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Jadedparrot Posted February 23, 2009 Author Share Posted February 23, 2009 Thank you Patti B. I appreciate a place to go. I will take some time to look around the site and understand this awful disease. I moderate on a telecom website and I know how helpful it is to be in a community of like supporters. It's a shame that such medical issues exist. But as long as they do, we might as well understand the monster vs. hide from it. Thank you again. I am headed back to ICU to see my mother and try to aid her in getting some sleep. I may not be on too often but will check back ASAP. My prayers to everyone out there in this struggle. Rhonda Quote Link to comment Share on other sites More sharing options...
beatlemike Posted February 23, 2009 Share Posted February 23, 2009 Hello Rhonda and welcome. I am so glad they were able to catch your moms at a early stage and that she was able to have surgery. However at stage 2, I would reccommend having follow up chemo if she is given the option.I had my right lung removed and follow up chemo in Aug.05 and have clean scans since. I hope and pray for your mother on her recovery. Mike Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 23, 2009 Share Posted February 23, 2009 I have to Echo what Mike said and make sure Chemo is given. IT will make things easier down the road especially at stage 2. Vent away Write away ask questions or do anything you have to right now. We are here and can answer a lot of things and help in a lot of ways also..... Prayers for Mom and Family right now!! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 23, 2009 Share Posted February 23, 2009 Rhonda, You may want to talk to your mother's primary care giver or the doctor who is overseeing her treatment now and discuss putting her on something like Xanax for the anxiety. I had twelve days between diagnosis and surgery, and had to pop a Xanax and an Ambien every night during that time to get any sleep... The Xanax helps shut up the negative voices (monsters) in the head so a person can get some rest... Also, believe me, it hurts. I didn't think that the medication in my epidural was working - until they took it out! I was in the hospital for nine days after my surgery because they could not get the pain under control - and we discovered that I have a "slight" allergy to Vicodin. Go figure! Once they remove her chest tubes, some of that discomfort will end. Taking out the tubes is an experience itself. They tell ya to take a deep breath before they pull, but there just ain't no breath deep enough for that! As long as the tubes are in there for drainage, they'll move around a bit, and it's very uncomfortable... When she does get home, it's not uncommon for the patient to be afraid to go to sleep for fear they are going to die. Really. I'm not kidding, I didn't sleep for about three days when I got out of the hospital. I also didn't sleep in my bed for over a month, I had to sleep propped up on my reclining couch because when I laid down flat, I gurgled... Make sure she uses her aspirator (Exasperator) as she is instructed, it helps to keep the lungs free of fluid and will help her start gaining lung capacity. It's not fun, but it's necessary. Also, when she is sent home, for the first week, at least, she needs to take her pain medication right on time, even if she thinks she's feeling better. If the pain has a chance to get a toe-hold, it's hard to get it back under control. She should take the drugs, as directed, for at least the first week before starting to ween herself off. Don't worry about drug dependency in the beginning, there's a reason for that dependency and it's PAIN. If she's months out and still taking the same dose, then you may want to speak with her doctor (especially if the doctor continues to prescribe that amount). As for the follow-up chemo and radiation, you may want to get a second opinion. I believe stage II is either a larger tumor or a tumor that has spread to the nearest lymph node...chemo and/or radiation would be a way to chase down any fugitive cells that may be floating. Although at the time I went through treatment, my oncologist followed protocol and wouldn't give me traditional chemo, he did send me to a radiation oncologist and put me on a trial for Iressa. I strongly suggest a second opinion on the follow-up treatment. Best of luck to you, both of you. Oh, and you should take to your doctor about an anti-anxiety pill. There are some that have a side effect of helping one in a stop-smoking situation... You could use the medication for those days that the elephants sit on your chest and it feels like the world is against you. It's not, you just have to work through it... Take care, Becky Quote Link to comment Share on other sites More sharing options...
recce101 Posted February 23, 2009 Share Posted February 23, 2009 Hi, Rhonda, welcome to the group. Collectively, I think we've seen every aspect of lung cancer from just about every perspective imaginable, and I doubt if there's anything you'll encounter that hasn't been experienced first hand by some of our members. So please ask any questions that come to mind, and vent your frustrations as often as you need. The reason we're all here is to help one another. Maximum congratulations to you and your mom for stopping smoking. Yes, it can be incredibly addictive. Now...you didn't give any hint of this in your post, but please allow me to jump ahead and urge you to NEVER EVER allow anyone, even yourself, to put a guilt trip on you or your mom for your past smoking. Although smoking is said to be the main cause of lung cancer, it's certainly not the only cause, and in fact adenocarcinoma is often called the "non-smoker's lung cancer" because it's the form most seen among non-smokers and never-smokers diagnosed with the disease. If you need any ideas on how best to respond to people asking insensitive questions or worse, we can definitely help! I hope you can find time to read some of the posts in the My Story forum and read the profiles at the bottom of the messages in any of the forums. My best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
SandraL Posted February 23, 2009 Share Posted February 23, 2009 Hi Rhonda. I am sorry to hear about your mom and your need to be here. You have gotten great advice so far from our members. I hope your mom starts to feel better soon. And then like others have said, I would recommend examining the chemo option as added insurance. You take care as well, you have a lot on your plate. Please keep us posted on how you and your mom are doing. Sandra Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted February 23, 2009 Share Posted February 23, 2009 Welcome, Rhonda. Hopefully, your mother will be home soon and feeling much better. I also had stage II NSCLC and had the upper lobe of my left lung removed. I also did three rounds of chemo. So, as you can tell, there are many of us here with similar stories. Keep us updated, and whether you have questions, need support, or just want to vent, we're here for you. Quote Link to comment Share on other sites More sharing options...
LovesLife Posted February 23, 2009 Share Posted February 23, 2009 Hi Rhonda and welcome. I am sorry to hear of your mom's recent diagnosis, but it is good that she was able to have surgery. I know I was in much less pain when they were able to take out the tubes and I hope the same for your mom. You have so much to deal with right now - I hope you remember to just take a moment to yourself to renew your strength. Please keep us posted as to how things are going. Sending many positive thoughts to you and your family. Linda Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 23, 2009 Share Posted February 23, 2009 Hi Rhonda . So glad you found us. You and your Mom are in the most stressful time after being diagnosed with Lung Cancer. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Bruce u Posted February 24, 2009 Share Posted February 24, 2009 Hi Rhonda You will find lots of support on this site. Members are very knowledgeable and can certainly help with questions you may have. I was diagnosed as stage 1B and had my upper left lobe removed. normally they do not recommend adjuvant chemo for that stage. I asked for a second opinion and did not get a decision. So I pushed for it and I had 4 rounds of chemo. My reasoning was to throw whatever ever I could at it now to reduce the risk of it reoccurring. Quote Link to comment Share on other sites More sharing options...
Nick C Posted February 24, 2009 Share Posted February 24, 2009 You are in the right place..lotsa support to be found here. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 24, 2009 Share Posted February 24, 2009 Rhonda, welcome to the site. I am sorry for the pain your mother is going through right now. Hopefully she will heal and get relief soon. I understand how you must feel having had more than one friend who is an only child with ailing parent(s). Take some deep breaths and try to take care of yourself as best you can. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Barb73 Posted February 24, 2009 Share Posted February 24, 2009 Dear Rhonda, All through my husband's diagnosis, subsequent treatments,and up until now, I have never given much thought to guilt over smoking. The reason for that is if our government could have thrown packs/cartons down to my husband's comrades during the Korean War (then, called the Korean Conflict - another copout) who is the guilty party? The promoters (for years) on TV, radio and other media, have promoted this addictive substance. Yes, the main and ONLY reason for concern is your Mom, her healing and any questions that may help you and her in all of this. So very glad you have come here. You will receive the very best, and you will be comforted, directed to excellent information, and be supported. Barbara Quote Link to comment Share on other sites More sharing options...
Jadedparrot Posted February 25, 2009 Author Share Posted February 25, 2009 My mom has been in ICU for 7 full days and since day 4, she has been getting worse. They had to go into her lung today and clean out some thick junk. She is laying there with a mask on because the nose oxygen is not enough. She is moaning and tearing and is pleading with me to take her home. I tried to comfort her and I just couldn't watch her suffer any more. I had to leave. My father and I left crying. I feel so awful for leaving her there alone to suffer. I can't watch. I don't know what to do. I have to assume they know what they are doing and are helping her the best they can. I need a miracle to pull her through. Thank you for all of your thoughts and words. This is so horrible... for my mother and for my dad and I. I pray she doesn't remember these days of suffering. I know I will never forget. Quote Link to comment Share on other sites More sharing options...
Patti B Posted February 25, 2009 Share Posted February 25, 2009 (((((Rhonda))))) I am so sorry that your mom is going through this. Wishing and hoping she gets better soon. Please keep us posted. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 25, 2009 Share Posted February 25, 2009 Rhonda, I can understand it is difficult for you to watch your mom suffer like that. I don't understand the medical staff though. My daughter is an RN and I'm sure she wouldn't be satisfied with a situation like you describe. There must be something they can do even if it is to convince a doctor your mom needs a sedative of some kind--even if it's just Ativan or Zanax. Have you gotten any feedback from the nurses? I'm so sorry you and your mom and dad are having to endure this. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted February 25, 2009 Share Posted February 25, 2009 Oh my gosh Rhonda. Your mom's suffering sounds simply awful. I cannot believe that there is not something they can give her to help with it. I would definitely push the issue with her doctors who are probably the only ones who can prescribe anything. One of the things about being in hospital is that is where they can presumably keep you more comfortable. Go back in there tomorrow and demand that something be done. How awful for you and your dad as well. This must be taking quite a toll on you. Prayers that all this suffering is over very soon. Sandra Quote Link to comment Share on other sites More sharing options...
Barb73 Posted February 25, 2009 Share Posted February 25, 2009 ((Rhonda)), I agree with the others that being proactive is key. There must be something they can do to help your Mom through this to comfort her. Often, speaking with the doctors about the situation can bring a change. We have found the oncology nurses to be a very valuable asset. My prayers are with you and asking that your Mom receives the help she needs for an improvement very soon. Barbara Quote Link to comment Share on other sites More sharing options...
Jadedparrot Posted March 3, 2009 Author Share Posted March 3, 2009 Sorry for the long span since I've been back. We've been on a roller coaster in ICU. After clearing out a bad infection in the lung and it no longer being collapsed, she is doing much better. She came home today... 13 days after surgery. She looks good and feels good. I think she is going to be just fine. Lot's of meds and follow-ups to come. I will tell her about this site and get her set up with an account so she can come and explore, learn and share with all of you. Thank you for all of your support. Good luck to all of you on each of your journeys! Jadedparrot (Rhonda) Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 3, 2009 Share Posted March 3, 2009 WOOOHOOOO Home at last !!!!! Yeah!!! Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 3, 2009 Share Posted March 3, 2009 Hi there. I am very glad to hear your mom has gotten out of the hospital and is doing well. Now she just needs to take it one day at a time and recover slowly. Be sure she is taking constipation meds (senokot) or the like if she is taking anything for pain. That seems to sneak up on a lot people and is really something you do not want. Take care Sandra Quote Link to comment Share on other sites More sharing options...
Bruce u Posted March 3, 2009 Share Posted March 3, 2009 Great to hear that your Mom is out of the hospital. Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted March 3, 2009 Share Posted March 3, 2009 Back home and feeling good. That's what we like to hear!! Denise Quote Link to comment Share on other sites More sharing options...
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