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