Nana Jane Posted August 22, 2005 Share Posted August 22, 2005 It's been a while since I've posted. Iwas going along hoping and praying that after I finished chemo last November and started on Iressa I would be one of the miracle statistics. I had clean, clean scans all the way up until July 19th 2005 with NED. Not bad for an initial Stage IV diagnosis. I retired from my research nurse position at NIH July 1 and had a grand time. Went to France for 2 weeks and spent some great time with my grandkids. I felt good, strong, and optimistic. Then in July I developed a problem with the hearing in my right ear, feelings of fullness, unable to equalize the pressure. We tried decongestants (no success) and the ENT wanted to start a short course of steroids. I balked at steroids unless it was lifethreatening and pushed really hard for an MRI. Never in the world did I expect what we found - multiple scattered lesions throughout all lobes of my brain...all small and likely not causing symptoms. I was stunned! two days later I started one of 15 whole brain radiation treattments. I have 3 to go. Those of you who have been through it know how awful XRT can be. Fatigue and nausea all over again like chemo. I cry at the drop of a hat, and can sleep most of the day. Today I lost all my hair again and my scalp is red and burned. I feel like a freak again. I hate the steroids that are making me so emotional, and the constant, constant nausea. The biggest concern I have is that I'll be off Iressa for the duration of the treatment, and I'm afraid the systemic control will be gone. I'll start Tarceva later this month, hopefully with similar results. Overall I feel very discouraged and lacking in hope; I'm angry again and don't even know where to direct it. I'm just not ready to die, but am sorely lacking in coping skills, optimism and energy. I'm being a real whiney-baby! Thanks for listening . Jane Quote Link to comment Share on other sites More sharing options...
Snowflake Posted August 22, 2005 Share Posted August 22, 2005 Jane, It's perfectly understandable for you to take a turn on the pity pot. Look at all the sh*t you've been going through in the last few weeks! I am SO GLAD you had some kind of ear infection sending you for an MRI prior to being symptomatic and that those little critters are going through the toaster (as Addie calls it). It's wonderful to read all that was going on prior to this latest side trip - a trip to France! Oo-la-la! Visiting with the grands... WOW! Now THAT is getting on with the business of living! I understand the anger and the fear, again, the fear. I don't think you need to channel the anger as much as get through it. It's a "stage", remember? Let's hope it's a short one! I think you're beautiful, I happen to like bald - my dad's been bald as long as I've known him! I do hope the irritation goes down - it's one thing to be bald, another thing entirely to HURT! Hang in there, Jane. It's just a detour, get through those orange barrels and get back on the road to Pareeeeee.... Take care, Becky PS As for that pity pot, when you're finished, don't forget to flush... Quote Link to comment Share on other sites More sharing options...
Guest spiritual Posted August 22, 2005 Share Posted August 22, 2005 My partner refused the 10=15 days rad to the brian (mets to the brain was revealed 8/12) She is home and I guess we are praying for that miracle that we are familiar with at this point. God has a plan for all of us sick or not and I hope that he gives us all just one day at a time to understand his will for us. She is no longer takinga any chemo, rad, traceva, Iressa (will she is finishing the last supply of Iressa) and she is on anti seizure meds for indefinitely. We are spending time together as much as possible and assure her that she is loved by God, friends & family. It's the only medicine that has kept her fighting and her spirits going. She is not in any pain. She does get a bit nervous to see her body going through some changes but I am trying my best to comfort her and remind her that it's normal to feel like she does and remind her that the changes are not going to hurt. Bless us all take care of U!! you are in my thoughts Quote Link to comment Share on other sites More sharing options...
Maryanne Posted August 22, 2005 Share Posted August 22, 2005 Hi Jane, It is time to put those boxing gloves on again and start fighting. You are facing a horrific devil as your opponent and he threw the first punch, now it is time for you to start punching and punching until you knock him down!! You did it before you can do it again. Just think of those lovely grands who needs you in their life. There is nothing wrong with you feeling the way you do. You have been through so much and have beaten the odds and now there seems to be a step backwards. How frustrating!! But now it is time to fight back. You will get through this, let us help you. Don't be a stranger, keep us informed with your progress, your successes and your frustrations. Whatever... Keep that positive attitute going and keep the faith. "Faith doen't get you around trouble, it gets you through it" Sending prayers your way. Maryanne . Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted August 22, 2005 Share Posted August 22, 2005 Hope you have real good luck with the radiation. The anti seizure medicine dilantin makes a person real tired. My sister and a few friends were on it for epilepsy. I'm wondering if mine has spread to my brain. I've been getting headaches, but sometimes I wait too long to eat and my blood pressure medicine gives me a headache as soon as I take it, about twenty minutes later. Well enough about my problems. Wishing you the best of luck! Sharon Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted August 22, 2005 Share Posted August 22, 2005 Jane. So very glad for the update on where you have been and how you are doing. I am actually quite pleased that you have come here to find the support, the hope and encouragement that you so desperately need right now. I am hoping that this is a passing phase for you ...these feelings that you are having. Which I believe are very real! I am also hoping that it is the medication that is causing you to slip in your thinking. It happens to the best of us. That decadron plus the dilantin will definitely change the brain chemistry. Do we have any physical control over that ???? Absolutely NONE! (dangit) Just wait it out. Take it minute by minute if you have to. This is a good time to try to control your thoughts by living in the past. Close your eyes and envision the streets of Paris. Get some travel brochures or books that remind you of happy times. Try to focus on the beauty in your grands. I feel for you, I really do. It is the medication that is causing you to feel hopeless... and to take you down paths that is against your true nature. Saddle up, Jane. You can beat this! I know you can! Remember, it is a chronic illness and you are going through the treatments to beat it back. This treatment is a temporary situation and you WILL get through it. And if you forget, You just come here and we all will help you to remember. Come here several times a day if you need to. We are here for you, lady! Remember, most of us have gone through it too! losta love and prayers coming your way! Cindi o'h Quote Link to comment Share on other sites More sharing options...
Darlene Posted August 22, 2005 Share Posted August 22, 2005 Jane I can't even begin to imagine how you are feeling, but by the lovely responses you will not have to fight this alone. You will be backed by a great team cheering just for you. Scream, yell, kick, and even bite if you need to, looks like you will have many here to really hear you. And don't worry about losing you hair and all, it apears you have far too much inner beauty shining through for that to be even noticed. My husband has a PET scan scheduled for the same day as you, I'll say an extra prayer for too you on that day. Quote Link to comment Share on other sites More sharing options...
Ann Posted August 22, 2005 Share Posted August 22, 2005 Jane, you know this is the world's best place to throw a pity party and it sounds like you have plenty of reasons to be the hostess. Sometimes, all this just gets to be too much to handle and we have to have a place to sound off. Hey, I would love to listen...anytime!!! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted August 22, 2005 Share Posted August 22, 2005 Jane,so sorry you are having a rough go of it right now. I'm sure you can fight your way thru this again.Remember that cancer is a low down dirty opponent and you are fighting for your life and all the good things that go with it. That said it is OK to fight dirty.Once you get the upper hand on it and knock it down,go ahead and really kick the POOP out of it. Quote Link to comment Share on other sites More sharing options...
Don M Posted August 22, 2005 Share Posted August 22, 2005 Jane: if it happened to me, I would be profoundly disappointed to say the least. But, I would take the needed steps to fight again as you are doing. Eventually, I would get my equilibrium back. I hope you can feel positive again, get some good results and can go back to the NED state. Don M Quote Link to comment Share on other sites More sharing options...
gail p-m Posted August 22, 2005 Share Posted August 22, 2005 Jane-- I'm so sorry you're having such a rough time right now and are having a bit of a "pity party". Please remember though, that given what you have faced and are now facing, you DESERVE to have a "pity party". But as others have said, you will also have to gear up and fight as you have done so well before. You can do it and come back here regularly to yell and scream or for whatever you need. With your fighting spirit, you just might dance with NED again in the near future. Prayers and thoughts are with you. gail p-m Quote Link to comment Share on other sites More sharing options...
Darci Posted August 22, 2005 Share Posted August 22, 2005 Jane, I am sorry to hear that you have had another setback. It sounds like you have been doing so well, and it sounds like you had a great time traveling. I am very new to this board, and very new to lc and lc treatments (my FIL was recently diagnosed) but I can only imagine how discouraged you must feel. It is ok to be sad, and angry, and disappointed - you deserve all those feelings and you have to let them out. But, like I told my MIL....the next day we have to get up, pull up our boots and do whatever it is that we need to do to beat this thing! You sound like an incredibly stong person...stay strong and you can make it through this too! Quote Link to comment Share on other sites More sharing options...
rogfam Posted August 22, 2005 Share Posted August 22, 2005 Jane, I second everything Cindi said! I'm so very sorry you're having to go through this. But Praise God it was found and now you can FIGHT this thing. You WILL get through this! There is ALWAYS HOPE! Never never give up. I'll be lifting you up in prayer, for God to give you strength, HOPE, and FAITH; for you to be comforted and healed in Jesus name! ((hugs)) Christy Quote Link to comment Share on other sites More sharing options...
Kasey Posted August 22, 2005 Share Posted August 22, 2005 Dear Jane, I am sorry you are facing this new challenge. It certainly is quite a scary thing. Also a disappointing one after doing so well for so long. It is something we all know we may face and do worry over. It is something that would certainly cause me to complain and whine, for sure, so pleasae don't worry about letting us know just how you feel. That is part of what we do here, you know? I so hope your treatment will get you right back to where you were before, NED and feeling good! I notice you were a research nurse at NIH. Was wondering if that is where you have received treatment. NIH is where I had my surgery! What a wonderful experience there. Best of luck to you and come and keep us updated. Kasey Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 22, 2005 Share Posted August 22, 2005 Jane, so glad you came here and shared your plight. Feelings normal -- this group knows that. Lucie, my wife, is also Stage IV NSCLC, given 9 months, and she is just about to celebrate 3 years of survivorship. So take heart! And hope! For the first year, we road the roller coaster of treatment -- clear -- return -- treatment -- clear, etc. We are still riding that as we speak. Lucie is presently undergoing a third chemo protocol for recurrence, to say nothing of the many radiation treatments along the way. We have come to the point where we say of scans and tests -- okay, if it is clear, we celebrate, and go on; if there is something there, we go with the next treatment, and go on. This attitude has served us well. And, of course, we have all that support here on the board and with our family and friends. Best to you. Don Quote Link to comment Share on other sites More sharing options...
pammie Posted August 22, 2005 Share Posted August 22, 2005 Jane, sounds like the brain mets hit you hard sinc eit was unexpected. Don't be too hard on yourself. You are not being whiny. No fun to loose your hair anyway but to be burned along with it is even worse. All sympathizing with you and will be praying for you. pammie Quote Link to comment Share on other sites More sharing options...
Nana Jane Posted August 22, 2005 Author Share Posted August 22, 2005 The outpouring of empathy and love from this forum has touched me today. I'm feeling so depleted physically and emotionally, but my inner angel helped me find strength to post my update last night, and today here is a whole host of angels lifting me up. Thank you, thank you. The weather here in Virginia finally cooled a bit today and even though I was slow and weak, I was able to walk my dog in the woods this morning. This seems to be a place for me where I feel God close, and this morning I just cried and cried and let out so much pain and disappointment...it was cleansing and spiritually strengthening. Letting go of control during this past year has been the biggest challenge for me, but I'm relearning that I don't have to do this by myself. Today the rad onc nurses did a wonderful, loving thing for me. They shaved off the remaining wisps of hair on my head that itch and burn so much, and massaged my scalp with a soothing lotion (after my treatment), and sent me home with sheets of a fabulous wound dressing called Vigilon which feels soothing and cooling. It's like a thin layer of cold jello that feels WONDERFUL! What a relief! Funny to look at, but what the heck...I've long since passed caring what my head looks like. Two treatments to go...I'm dragging to the finish line, and then I can rest. There doesn't seem to be enough sleep but it seems like that's all I do. You all are a wonderful support. And I know you know what this is like. Yes, Kasey, (sorry if I didn't spell your name right) I am getting all my treatment at NIH. It really is an amazing place of hope and healing. I knew it as a nurse, but even more so now as a patient. Thank you all for your support. It means the world to me. Jane Quote Link to comment Share on other sites More sharing options...
kamataca Posted August 22, 2005 Share Posted August 22, 2005 Sorry things have hit you so hard lately. Prayers going out to you for strength. Kelly Quote Link to comment Share on other sites More sharing options...
nancy c Posted August 22, 2005 Share Posted August 22, 2005 Do not give up--you can fight this. Hang in there. It's ok to cry! God bless, Nancy C Quote Link to comment Share on other sites More sharing options...
sharyn Posted August 22, 2005 Share Posted August 22, 2005 so sorry about the latest developments... but thank God you had the ear problem that led to early diagnosis of brain mets. I am a great believer in "all things happen for a reason"..... I wish you strength to get through this new battle.... I will pray for you.... Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted August 23, 2005 Share Posted August 23, 2005 (((Jane))) I'm so sorry you've got to go through more treatments and upset for awhile. I know it would break my heart for a while to find out about brain lesions after doing so well for so long. I think I'd feel the same feelings I felt when first diagnosed only with added disappointment. Nobody I know could take that reality without a lot of tears and fears. Your walk in the beauty of nature with your loving dog and a good cleansing cry was the best thing you could have done. Shows there's a large part of you that instinctively knows what's best and isn't going to be defeated by a new obstacle. Nature and dogs (and cats) are some of the best medicine! I understand your fear about going off the Iressa - I've had that scare. We can only trust your doctor that, right now, it's more effective to go off it for awhile and then start Tarceva later. I switched from Iressa to Tarceva in June and I continue to be stable. A big bear hug to you. Rest, put the "jello" on your poor sore scalp, visit with us, and, hopefully, this rough spot will be behind you very soon! Leslie Quote Link to comment Share on other sites More sharing options...
bunny Posted August 23, 2005 Share Posted August 23, 2005 Jane, I feel so inarticulate in the face of everyone elses posts. Who can blame you for being bummed!? You are a beautiful example of walking through fear, sadness and disappointment. You're fighting! That, to me, is what matters. The feelings will pass, like Cindi said. I am on the prayer squad, and an admirer of your spirit. xoxo amie Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted August 23, 2005 Share Posted August 23, 2005 Jane, Keep fighting!!! Never ever give up!!! My prayers are with you!! Living life, Jamie Quote Link to comment Share on other sites More sharing options...
Treebywater Posted August 23, 2005 Share Posted August 23, 2005 ((((((((((((Jane)))))))))))) We are so here for you and fighting with you. It's wonderful that they took that extra time and helped you to find some comfort. Quote Link to comment Share on other sites More sharing options...
Nana Jane Posted August 25, 2005 Author Share Posted August 25, 2005 I should be on top of the world tonight as I had my 15th and LAST radiation treatment today. But I feel so crummy, am so tired, nauseated and dull-minded that I just can't feel celebratory. The cough I've had since the day I was diagnosed with brain mets 3 weeks ago has worsened...it's unresponsive to cough suppressants, and it's tiring me out. I had a chest CT today and will find out tomorrow whether I've had a local recurrence during the 3 weeks off Iressa. Of course I expect the worst! Alimta is next on the menu. Has ayone had whole brain radiation? If so, tell me what your side effects were like. In particular, I'm curious as to whether you noticed increased sinus and head congestion. My sinuses feel so full all the time, and my ears, also. No runny nose, no stuffy nose...just major head congestion. The rad onc people didn't tell me it was an expected side effect, but maybe because I'm an oncology nurse they figured I'd know all that. I continue to cry at the drop of a hat and for no special reason. Hopefully that will improve as I come off the steroids. I've also developed mucositis today...that's new. Back of my throat red, some patchy open areas. And all the skin on my head is bright red, painful and itchy! Hard to find hidden pockets of strength right now. At least the radiation is done! Now recovery. Thank you all for your prayers and encouragement. You're an amazingly compassionate, understanding group of people. Love and prayers to you all. Jane Quote Link to comment Share on other sites More sharing options...
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