peacelover

First of all, I am sending prayers and blessings your way for this journey. You are right that everyone is different. Try not to expect anything really. Things will happen and these are not in your control. And no matter how much you love you cannot fix it. I can only speak from the caregiver perspective-this is a rollercoaster of emotion. Be loving with yourself and patient-expect for you that you may experience guilt when you are happy, worry that each time you see her will be the last, scared that you have not done everything you could, angry that your mom has to go through this, even angrier that she could be taken from you-----it took me years to figure out that these feelings were all okay. I have come to treasure my hour drive back home from her house because I get the chance to let go of all those mixed feelings. For your mom- I believe that the most important ingredient is attitude and belief. If you believe it you will see it-so I would encourage you to find support to help you and your family to focus on or find the positive in each day. Some days will be easier will be easier than others. As much as possible within the process of healing do not focus on the cancer-focus on the health and vitality even if it seems very very small and hard to focus on... Take a deep breath-this is not a sprint, it is a marathon. It can be overcome and life can still be good- Namaste- Melissa

Your grandpa and your family are in my prayers- sending angels and blessings your way- Melissa

Hi- First, let me say I am sorry for what you and your family are going thru-it is a really scary experience for sure! My mom had an episode prior to her right lung collapsing where she was talking all kinds of jumbled up stuff...she was not on any meds so we knew that this was not causing any 'hallucinations' are speech pattern interruption but it was connected to large coughing spells. THese episodes seemed to happen right after them She was seeing things in the house that weren't there(angels, getting angry that my dad moved the rooms around, she sat in a chair that was not there), she would be in the middle of a sentence and start talking about something totally different not missing one step and thinking the 2 topics were the same one, she would forget common words like 'and' and 'house' and 'dinner'...i remember one time it scared the heck out of me because she says, 'Melissa, what is that thing, you know when it makes noises(pointing to her stomach)and you eat and it stops?' I say, 'your hungry?' she says yes that it -I am hungry--- we thought the brain cancer had returned but it ended up being something called hypoxia, which means her brain was not getting enough O2 because the lung was collapsing-as soon as her body adjusted and she got some oxygen she was fine...since your grandpa is SOB and coughing so much maybe it is that???? Sending blessings your way- Melissa

As a family member I am often angered and frustrated at the harshness of this disease but after 8 years you forget about 'shouldn't of been' and just live in 'what is' It is difficult to sit 'helpless' as your loved one endures treatments. The hardest for me has been the new 'normal' and watching mom have to give up some of those things she used to love..... Still, I sit here tonight after visiting my mamma's today and am in absolute AWE and WONDER. And ashamed at the perceived pain or inconvenience of any illness I have had has put me thru How the heck does she keep doing this??? Day after day, year after year...she is always smiling...what kind of Herculean strength does this women have??? What kind of cancer is it that crawls like a snail, that refuses to leave altogether but has not grown in a year??? All I can say is wow, my mamma is a super-hero!

many prayers for your wonderful husband- cyberknife is incredible...my mom's brain metasteses came back for the 3rd time and this was her only option....they are gone now and it has been 3 years with no return blessings- Melissa

My mom took Almita when it was still in the FDA trial studies. It worked great for her. It was kinda scary for us because it did not have any of the other side effects that the other chemos did and actually made her hungry...we thought there was no way it could be working...it did! She saw complete halt and srinkage of her primary tumor and 3 smaller ones she has vanished altogether. Her doc took her off of it and her tumor activity is still stable..non new growth...almost like they are in a holding pattern or something. I hope your mom sees the same postive result! Peace Melissa

Hi Leslie- I know I am a little late here but I hope these words find you. 8 years ago I could have been the one writing them. I empathize completely with what you are going through and know there is not any way I can make that better. Just know that in some way there is some beauty that will come from all of this craziness. Seeing it now is impossible but someday the light will shine strong on you and you will feel the blessing right along side the curse. Sometimes, this disease takes you to the scariest place imaginable right before it brings a much needed sigh of relief. Your dad can get better and my hope is that he will. As far as your feelings go, try to embrace them fully. The biggest and scariest of them are those that need your light the most and often the ones we turn our backs on for fear they will overtake us. We are stronger than fear! and in fact the more we resist them the more they stick around. For a long time I was afraid to be anything other than chipper and positive when I was around my mom, like i had to be strong enough for both of us and then one day I just couldn't deal with it anymore and broke down right in front of her. It actually helped us both. When I could show softness she could show support and while her health was bad she was still my mom and needed to offer me comfort the way that moms do. Me playing super women did not help either of us. I pray that you will allow your dad to be your dad and share with him how scared you are, trust me, you aren't hiding anything from him he doesn't already know and letting him see you being his little girl and needing him for something instead of him needing ya'll might help him find a reason to be strong too. Prayers and Countless Blessings are coming your way. Melissa

my mom could never have surgery either...there is so MUCH that can be done without it! There may be a blessing with no surgery, I hear so many stories of cancer growing really fast after surgery.... my mom is proof that you can survive long term without it! Saying extra prayers for your family.... Melissa

words cannot express my sorrow for you.... I am sending you comfort and strength and knowing that your mom IS indeed dancing now... Blessings Melissa

A big hug and HELLO to everyone! I have been reading some recents posts about the total chaos this disease causes and I have to say my heart is just breaking for everyone! My prayer list just increased dramatically.While God is busy with his part I thought I would share something with you all that may offer you a bit of hope. My mom has had lung cancer a really LONG time(dx 3/99). Been NED then w/ mets to brain, liver and adrenal glands-on all the 'new' drugs as they were trials-Tarceva, Alimta, Iressa, Avastin-was the first person to lay in the cyberknife machine at Dale Liphsy.the fifth to receive a new laser rad that pinpointed the tumor nudged up close to her aorta..point is she has seen both the ugly and uglier sides of this cancer and her roller coaster must be in the Guiness book for scariest! I visited her today as I do every weekend. She was up, after a trip to the farmer's market, had just finished a load of laundry and was making my dad some soup-she was giving him heck about the fact that she was up waiting on him for a change...her doc visit was Thursday-she has gained 12 lbs since last weigh in 2 months ago(woohoo!)her blood counts are better than they have been since her first round of chemo and rads, her doctor said she looked great, her lung tumor had not grown and he would see her in another 2 months. No CATs, no MRI....no huge issues from her cancer at this time. So, despite what it may seem It IS possible to come back from the brink of death and thrive- it is possible to live a somewhat 'normal' life with this disease and it is possible to live WAY longer than a diagnosis tells you... May all of your loved ones be blessed with the same 'normal' for many, many years to come! Bright Blessings! Melissa

I have read a lot of them and while there are some good ones I Beat Cancer: 50 people tell you how they really did it! Cancer Happens! and Beating Cancer with Nutrition were great. There was no way that i could be prepared for the whole thing though, the roller coaster of emotions is something that is talked about but cannot be truly understood until you go through it. This place is really awesome too...you will find a lot of support here from those who are walking in your shoes and it is SUCH a help! Keep Thinking Positive thoughts! Blessings Melissa

Hi- Hope your mom is doing better tonight. It could be any number of things, O2 level is probably it...my mom had been here several times and I know that it can be really scary. A couple of months back my mom was looking right at me and could not remember my name..started slurring her words and when asked to count from 1-10 skipped the 4 and 7 everytime...this time it was O2 deprivation. Before it was tumors--I would keep a log of meds, eats, liquids and sleep over the next few weeks and the times she is making no sense then report to the doc...for what it is worth my mom has never been on any meds but the chemo,megace and advil. She has never takin pain meds and still gets this way from time to time and her scans are clean. Could it be that these times are right after she sleeps? It seems to be really hard for my mom to get her wits about her when she first wakes up-regardless of if it is morning or a nap... Sending you prayers! Melissa

WOW! This is a hard thing to hear your mom say...I wish there was some thing that I can do to make you feel better, make the cancer dissappear... My mom and I had this 'talk' once-about 4 years ago when she had just gotten news that the brain tumors were back and she was sick of being tired all the time and having to not do her favorite things in life anymore...she bounced back maybe your mom will too... I cannot tell you how many times we thought mom was gone, soon...she is still here. I am sending you big buckets of hope-be strong and know that you are blessed to have time with her. Try not to let your trip be tainted with the thought of it is the 'last time' because it might not be! Blessings Melissa

Hiya- We went thru a long period of time like this with my mom when she was on Iressa and right after her RADS to the primary tumor hurt her espohagus so much I think it is pretty normal. Leaving the food around the coffee table is a good trick-people eat when they are bored when it is in front of them...we did a lot of Ensure but there was 3 weeks solid that all we could do was get mom to drink gatorade-the doctor finally threatened to put in a feeding tube...she ate again quickly. We also finally had a talk with her..'if you want to live you have to eat, your body is fighting a fierce battle right now and you can't expect it to do it's job when you are not giving it any fuel' she ate after that...although she still says everything tastes like cardboard. Hope some of the suggestions from everyone here wokr for ya'll. Blessings Melissa

Hey Nova- You are not insane. I left my mom's house once after we got good news from the doctors but she spent the entire time that day talking to me like I was her mother really PO'd at the world. I cursed, told God I thought this was a really ROTTEN way to do my mom etc. I got out of my car on the side of a country road and screamed at the top of my lungs! Cried, kicked dirt! A police officer stopped and asked me if I needed help-I screamed at him-'Only if you can make my mom's cancer go away!' he actually tried to hug me...seems his mom died from cancer so he knew exactly how I was feeling. I actually went to the second hand store once and bought a whole bunch of cheap plates..then every week when I came home from mom's I would throw them at the wall in the garage.that shattered crashing sound was just how I was feeling and seemed to help.I felt awful destroying something that may have helped someone else so I quit this pretty quick...I carry bubble wrap in my car...just in case I need to release frustration in a 'populated' area Point is, what your feeling is totally normal...the best advice I can give it is to FEEL it, don't stuff it cause it will not go away but grow into something that threatens to overtake you. I am in a place today where I am not so angry as I used to be but only because I allowed my self the luxury of not being superwomen-I hope you find that place too! Blessings to you that hubby gets thru this rough patch and that you allow yourself not to be a superhuman non-feeling strong girl from time to time. Melissa

Wondermom- Test result time is hard. Especially when your loved one is feeling better. In the beginning I thought so many times 'how could she be sick, she looks so great!' For the longest time after her Dx everytime I went to my parents house I had some new 'idea' that would help mom fight. A new vitamin, a new tea, a new diet, a new way to deal with the side-effects, a new statistic. I can't honestly say if any of those things helped but it was the only way I knew how to cope...I had to do something. I think my mom knew that it was helping me as much as her....and WOW! I can really relate to feeling guilty for being happy. Some of the most awesome things have happened in the last 9 years for me and it IS tough to allow happy when someone you love is having such a hard time. Your mom would not want you to NOT be happy, you know. Years later I have figured out my moms secret to living-she never focuses on the cancer and lives each day like she wasn't sick-I had to stop focusing on the cancer and start living like she wasn't sick too... I say do what you need to to cope and let your family know when you have had enough and need a bit of time for you- Blessings to you! Melissa PS YOUR Relay for Life team ROCKS! Pat your self on the back for that!

Wow, I wish that I could come over to our place and help out- I am so sorry you are shouldering all of this and am sending you prayers... blessings melissa

Mom's right, cancer-scarred lung finally collapsed totally. Seems weird, but it really is a good thing. The last few months the coughing and SOB has been really bad for her. Confusion and other issues related to hypoxia and now that the bad lung has collapsed she is breathing better and not coughing at all....even has to use her O2 less too! Doc says that now since the lung has no blood flow her body is not having to work double time to reoxegenate the blood. She had 2 small tumors in her good lung last PET and now those are gone too! Now, if we can just get this pesky plural effusion to scram we will be in business! Just wanted to share that sometimes goodness comes in strange packages- Blessings to all- Melissa

Hey Kelly- I am sorry your mom is having trouble with this-I know it is painful. We made popsicles from carrot and apple juice for my mom when she could not swallow and they just sortof melted in her mouth without her having to 'swallow' much... the doc also gave her some miracle mouthwash that has benzocaine and maalox-told her to swallow it and this 'numbed' her enough to get some liquid in her. The pharmacist can make it for you. Sending lots of prayers your way Blessings Melissa

Hello All- I haven't been here in a while-Between marathon training, work, studying for my PMP exam and family there has not been much time for message boards or anything remotely 'non-vital'. I wanted to share a bit of 'hope' with everyone on Easter weekend. March 3 2007 marked 8 years since my never-smoker 52 year old mom was diagnosed with terminal NSCLC. At dx there were multiple lesions in her brain already as well as her adrenal glands and they gave her about 4 months to live. Her journey has not been without hardship-however she has never focused on that and would be upset with me if she knew that I focused on that. She has never chosen to focus on the illness-rather life and things other than those related to cancer. I believe this is one of the keys to her long-term survival, she doesn't give her cancer one ounce of energy other than she absolutely must give it. Please do not misunderstand, I am not questioning the pain that accompanies this disease and treatments, I have witnessed it and know it is intense and makes it hard to focus on good, I am encouraging everyone to try to focus on good anyway- I have asked her to come here and share her story-she simply says there is nothing she can tell people here about lung cancer that they don't already know first-hand. I tell her that she is a miracle and that she could help offer others hope, she says there is nothing special about her, she is a normal person and doing the best she can with what she has been given. I hope everyone has a great Easter- and send you all warm beams of light and love that will lift you up and allow you to focus, if only for one small moment, on what you can do rather than what you cannot. Bright Blessings- Melissa

Hi Stephanie- I am so sorry for what you are going through and for your dad's diagnosis. I wish I had some great piece of advice to offer you, I do not. Only encouragement for you in this hard part of you and your fathers journey together. Try not to pay attention to 'the odds' of survival for your dad. They truly are only numbers and guesses and not an accurate reflection of your dad's individuality. Focus on today and 'see' your dad as healthy and healed-visualization helps SO much! My mom's 'odds' were pretty bleak when they found her cancer. 4 months max the doctors said....she was 52 then...Christmas Eve she wil celebrate her 60th birthday so I am hopeful that your dad will walk you down the aisle yet! Blessings to you both! Melissa

Oh yes, I can relate to that! I have not lost my parent yet to LC but I can really identify with your thoughts. So many times we have thought mom was about to be gone and it has really made me look at my own death in a different way. In 8 years I have made several trips to the ER thinking I was having a heart attack which turned out to be panic only-those trips started while thinking of my own mortality. Since my mom was not a smoker and there were not any outward signs of illness when she was diagnosed I spent a great deal of time early on thinking I 'could have' all kinds of nasty diseases-my sister has gone thru this too so I think it must be normal. My belief system tells me that even in death we never stop and I am logical enough to know this is a part of life I just think it is a hard thing to deal with regardless of the parents, or our, age. I used to not be so conscious of time and living my dreams-now i am embracing every moment and REALLY seeing how much I am blessed.... I am sending you peaceful dreams and blessings! Melissa

What an aweome daughter you are Kim-I am sory that you, your family and most of all your mom are going through this but know your mom is grateful that you are there for her making the sacrifices needed at this tough time. You will no doubt take memories from the experience that are priceless. I have a few things to say about the assisted living facility. First, understand that they asked you to transfer your mom to skilled nursing care because they are not equipped to handle her needs at this building-it is NOTHING personal. In honesty they probably should NOT have admitted her with so many meds and potential issues. Second,was she medicating herself at the facility? If not they are in serious trouble for her overdose on narcs. Third,the nurse stating that it is probably illness prgression is her covering her facilities butt so you are within reason not to believe her. Fourth, If nothing else I would report this building to your states health and human services department. Unfortunatley, there are not as many rules governing assisted living care as there are skilled nursing facilities so they are not inspected as much but the overdose and fall should be reported! You have had some good advice here and I just want to add that you are never alone and that I am sending you comfirt and blessings Melissa

This may just be one continuous post about 'SURPRISES' Mom is really earning the name 'the comeback kid' My mom is feeling better...she had enough energy to do 5 loads of laundry yesterday. Not bad for a gal that could not get off the couch a few days ago. She saw the doc and was supposed to have chemo this week but they decided to hold off another three weeks to let her body recover. Her blood counts are fine so no worries there...brain scan next week as scheduled. Her doctor is so great-he told her that he saw nothing to really 'worry' about that she had been on chemo every three weeks since May and that this would make anyone tired and weak..this simple statement changed her whole attitude. I talked to her this morning and she said, 'you know cancer is probably going to win eventually but i think i still have some fight in me left' I am not sure i could be so strong...i have to say that the strngth of the human spirit just amazes me soooo much! Thanks for all the great thoughts everyone! Blessings! Melissa

Hi Mitchell- I know you guys are scared right now. I've been there and it is hard to find something good to focus on in the middle of a cancer diagnosis. I am however jumping up and down with joy for ya'll that this was found at such an early stage, that your mom was able to have surgery to remove it, that you moved home so you are there to help and that only that 1 lymph node tested positive-I can see so much to be hopeful for in your post and situation. If you have to deal with this beast at least she has a fighting chance! My mom has been fighting a long time and quite frankly it stinks..I wish i could offer you a magic pill that would make it easier to focus on the positive and would ease your mind of the no doubt horrific things we can create in our minds that may be 'on the horizon' for our loved ones.... I can offer these things from my own experience. Everything is what you make it. Feel everything you feel, including sadness, rather than trying not to so you appear strong...you give fear power when you don't release it. There will be great days and not so great ones....this will be somewhat like a roller coaster, try to find joy somewhere in this ride! You will never forget mom has cancer BUT as time passes you will stop thinking that each time you see her may be the last and start living life again. A statistic is just a number and should be viewed as such. You will make yourself nuts if you look at them to long. Your mom has to be committed to healing rather than just dealing with the disease-do the best you can to lift her up and help her focus on the positive-it will help you too! I think you both have so much to be hopeful for Mitchell and am sending you blessings and asking that angels lift you both. You and your mom are lucky to have each other! Melissa