Ladyintheglen Posted November 23, 2005 Share Posted November 23, 2005 Hello all, I am going to ask this hard question. You have all seen and heard many things that I have no clue about. Please advise me. Truthfully. Having the cancer spread so many places (brain, liver, kidney, and lymph nodes in the abdomen) in such a short amount of time.... Do I need to prepare myself??? Cheryl Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 23, 2005 Share Posted November 23, 2005 ((((Cheryl)))) My first inclination was to avoid responding. My heart is breaking for you guys and for us and for others. Here is what I am learning: Not even these wonderful, experienced people can answer these questions for us. You are like me in that you need some idea where this road is leading. I want to be optimistic and determined like Brian is, but I keep getting my hopes up only to have them shot down. I was watching a candle burning yesterday while Bri was snoozin'. Try that for a few minutes and watch the flame flicker........growing stronger and then less strong, sometimes looking like it may go out only to rally again and burn strongly. That is how I feel this journey has been for me. It is so hard to keep trying to believe in miracles. It is so hard to not know what is ahead or how much time we have. Cheryl, I think we have to let go of this. It is driving me nuts. Will my FMLA be long enough to care for Bri as long as he may need me?????? What will I do when my 12 weeks are up??????? Shall we plan to go to church tonight???? Is he feeling stronger, really, or just acting like he is??????? On and on and on. I am trying to give this concern to God. I will pray that he takes it from both of us and replaces it with trust in HIM> Our God is a Faithful God. He told us to 'not be afraid'. I understand, and I care and I wish I could help. Lots of love P Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 23, 2005 Share Posted November 23, 2005 I would say, "Yes, you need to prepare yourself". But that does not mean the time has run out yet. My wife had multiple bone mets throughout her body when she was diagnosed. Right now, she is fighting mets in bones and liver. Yet, she is still here and living a good life. I know that she could die any time, but we both choose to live each day, and be thankful for what we do get. When she was diagnosed in Oct. '02, we got together for Thanksgiving at our house as probably the last one together. Tomorrow she will celebrate the fourth Thanksgiving since diagnosis. Be prepared, but keep on fighting with him. Don Quote Link to comment Share on other sites More sharing options...
Ann Posted November 23, 2005 Share Posted November 23, 2005 (((((((Cheryl))))))....I am so sorry that you are feeling like this. I have been down the same path and know exactly what you are feeling right now. You know, I think the day we have a loved one diagnosed with cancer like this, we start preparing ourselves. We think the worst and feel completely lost and overwhelmed. Yes, the cancer is spreading rapidly which is common with small cell. But, the good news is that it also responds to treatment very well. Like Pat, I want to be optomistic and give you a hug and tell you everything will be alright. That's not always the best approach. I needed to be prepared and ready. I needed to make sure that everything necessary had been said and done. I needed to make sure that every possible treatment approach had been exhausted. Cheryl, at this point, enjoy every good minute you can. Make memories and never give up hope. Believe in the healing power of God and trust your doctors. But, friend-to-friend, be ready for the unexpected when fighting this monster. I am keeping you and your husband in my thoughts and prayers. Please let me know if you need to talk. Quote Link to comment Share on other sites More sharing options...
Ladyintheglen Posted November 23, 2005 Author Share Posted November 23, 2005 Oh ((((((Pat))))))and (((((Don))))), You dear sweet people. You have so much on your plates and yet take time out for my whining. I'm sorry I bothered you. Pat please .... what do I say. Oh how my hearts breaks for you!You and Brian have been and will continue to be in my prayers. Cheryl Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 23, 2005 Share Posted November 23, 2005 You did not bother us. You reached out to us. We reach out to you, too. That is how this works. Love and prayers and big hugs. Pat Quote Link to comment Share on other sites More sharing options...
Carleen Posted November 23, 2005 Share Posted November 23, 2005 Some people think that I live in denial, but I prefer to think of it as living in hope. And so far, it has worked for me. My husband started this journey from diagnosis with lymph node and liver mets. At that time, doctors were telling us that it was considered advanced and hopeless. They told me to plan for about 6-9 months. That was over 2 1/2 years ago. He was stable for about a year, and then within a few months time, he had progression to include multiple brain mets and pancreas mets. Again, we were told it was growing rapidly and that we should be prepared. Well, that was over a year ago now. There is no one, doctor or otherwise that can say for sure what your particular tumors and mets are going to do; how they will react to different treatments; and how much time it means. Your husband has SCLC which generally reacts well with chemo, and even though it has metastysised the different areas can still be reversed with treatment. I've seen others post who have had wide spread mets and have still posted complete remissions and NED. I guess what I believe is that to live each day with faith and hope will allow me to enjoy each moment and each day without the grief and doom of believing otherwise. And then, if it were to happen that our battle should end, I could look back and say that we made the most of every day and wasted none of it in worry and anxiety of things we couldn't control. In short, I don't think your husband's progression equates to an end of the journey. There is always the possibility it is, but there is also just as much possibility it isn't. Come what may, you will be in my prayers. God Bless Quote Link to comment Share on other sites More sharing options...
dchurchi Posted November 23, 2005 Share Posted November 23, 2005 Cheryl, I will share a little of what I have been through these past few months with my husband. Short version is Alan had mets to the brain in July, large solidary tumor pressing on his brain stem at that point things were very dire, but since radiation Alan is doing remarkably well and we have taken a couple of trips together since. The flip side is that I know once his cancer went to the brain I needed to prepare for when the "time" may come. Just the other day Alan told me he wants to finalize his funeral arrangements and that is what I will be doing on Tuesday night. Alan also has been "tying up loose ends" as he likes to call them. Like Pat and Ann I remain hopeful, but also must remain realistic with this horrible disease. As Alan describes himself, he is a ticking time bomb that can go off at any moment. I am sending cyber hugs and saying prayers to help you get through this most difficult time. Please PM me anytime and we can cry together. Debbie Husband Alan dx small cell lung cancer Jan 10th 2005 Quote Link to comment Share on other sites More sharing options...
Ladyintheglen Posted November 23, 2005 Author Share Posted November 23, 2005 Thank you all so very much. I appreciate every response I receive or will receive! There is one thing though. My husbands first diagnosis was small cell (a mistake). When we switched dr.'s and had another biopsy done (first one didn't even have enough tissue to diagnose cancer let alone what type) Jake was diagnosed NSCLC neuroendocrine carcinoma with mixed cell histiology. I guess that means he's got it all. There is extremely little information on this type of cancer. Cheryl[/u] Quote Link to comment Share on other sites More sharing options...
Carleen Posted November 23, 2005 Share Posted November 23, 2005 That was the same scenario as my husband's diagnosis. Initial biopsy results said SCLC which was repeated by a couple of readings. It wasn't until we sent the unstained slides to the Mayo clinic did they come back with a new diagnosis of Poorly differentiated Non small cell Neuroendocrine Carcinoma. Unfortunately, we haven't seen any of those awe inspiring regressions that you see from chemo with SCLC, however the good news of this cell type is that it doesn't grow as fast as SCLC. We've found that it does seem to spread to other areas, but once there, those tumors seem to be kept stable with chemo and can be kept that way for long periods. I hope the same holds true for your husband. We just need to hold out for a little more time until that cure comes along. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted November 23, 2005 Share Posted November 23, 2005 Cheryl, Reading your posts today has just broken my heart. I look at that picture and think this just isn't fair. I'm so sorry things are looking so scary right now. Hold onto hope, and hold onto each other, and know that you are loved and prayed for. Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 23, 2005 Share Posted November 23, 2005 That is 3 of us with similar dx. Cheryl, Carleen is really well educated on our types of tumors and has been a really big help and very encouraging for me and for Bri. Love P Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 23, 2005 Share Posted November 23, 2005 Cheryl, no one really knows that. I remember getting myself prepared when I was diagnosed, because I didn't know if I'd survive, and if I did, for how long, so I made sure all my ducks were in a row. That meant will, living will/POA, and all that stuff, plus dealing with family and friends. My goal from the first was to maximize my survival. There may come a day when I feel that means to stop the treatments. If so, I tried to "be prepared" early on. Of course, we don't get to set our own timetable for our life, but I think I'm much better off about it mentally today than I was 18 months ago. God bless you all. I'm sending you my best wishes and prayers. Di Quote Link to comment Share on other sites More sharing options...
hollyanne Posted November 23, 2005 Share Posted November 23, 2005 Cheryl - I sent you a private message as well -- in much detail! I think every caregiver has to be somewhat "prepared" that is the nature of this terrible beast--- we all know the devastation that can come or has come at any moment. As I mentioned, we thought my mom had one "tiny" tumor in the lung and within the timeframe of one month - the new scans (in October) found new mets in adrenal gland, femur, rib desttruction, hips, neck and spine -- she went from working out 4X a week to being bed- ridden. And as people on this board know, I was convinced (and the onc warned us) that she probably wouldn't be here for the birth of my baby in a couple of weeks. It felt like a train out of control. YET, we went to radiation, she started chemo and Zometa and decided to fight --- and based on her lung scan last Friday -- there has been no new growth -- new areas of pain have not popped up, etc. Please stay strong, reach out to thes wonderful people...and weigh all your options. As you know, you are continually in my thoughts and prayers. Holly Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted November 24, 2005 Share Posted November 24, 2005 Hi Cheryl, Its never easy...this disease. I feel its always best to be prepared for anything but hope and pray for the best. I made sure that I told my Mom everyday how much I loved her and tried to do something special to make her happy each day just in case it was her last day. I also think that when you are so close tosomeone you probably will know if the end is coming. Hugs and prayers for you and your husband...Janet Quote Link to comment Share on other sites More sharing options...
Kel M Posted November 24, 2005 Share Posted November 24, 2005 Cheryl, I just want to echo what the others have said. Deep down, I believe we caregivers begin coping with the possibility of death from the moment of a cancer diagnosis. Hope, however, remains our guide. A trick we used was to focus on living for today. My Mom and I used to say "today is a good day and we'll worry about tomorrow, tomorrow". So many great things can happen today - and so many times they did! This journey is incredibly difficult - may God light your path. My prayers are with you all. Kel Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 25, 2005 Share Posted November 25, 2005 Hi Cheryl, You certainly got a lot of good advice here. You just have to take it one day at a time at just watch to see if there are positive changes. It would probably be beneficial to make arrangements for the furture if there is progression. Keep the faith as it has moved mountains! Faith doesn't get you around trouble, it gets you through it. Hang in there, this is such a difficult time. Sending meditation prayers, Maryanne Quote Link to comment Share on other sites More sharing options...
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