Joppette

HI Janet, Hate the circumstances, but looking forward to getting to know you. Judy in MI

Thanks Steph, for the article. What the Onc says is that at .5 mm, it is big enough to be Pet scanned. If it lights up on the Pet, he wants to remove the lobe. Obviously a lot of thought and research is going to go into this before I allow that. I already am missing one. However, I've been assured by others here that missing two lobes is not as bad as it sounds. We'll see. MI Judy

Not a good day here. Woke to very severe pain in my back ribs on the left. Went to the ER and they diagnosed pleurasy. I was due for a CT and in fact received a call from scheduling yesterday to schedule it. Well, it's done now, so I don't need to schedule it. I'll call my Onc and set up the follow up appointment now. They said that there are two nodules now. And both have grown slightly. I know the one was 4.5 mm, and he said if it got to 5mm they would pet scan and probably operate and remove the lobe. *sigh* I'm not going to look into the future and make predictions. I'll let the Onc. do that. But obviously I'm not thrilled to hear this. I am going to go lay down. The morphine did a good job with the pain, and I'm really drowsy. Judy in MI

Chrissy, I'm so sorry for the bad news. If she wants to be home, do ask the Doctor's about Hospice. The do an excellent job with pain control, and in helping the family. They cover (in certain states) medications, and do many things to make it easier on everyone. My heart goes out to you. I've been there with my Mom too. MI Judy

I agree with Ginny. My response to the smoking challenge is this: "Do you smoke?" The person usually says "No". Theh I say "60% of all new lung cancers are in non-smokers or those that quit 20 or more years ago." Then walk away. We have a lot of people here at Lungevity that never smoked or quit a very long time ago. No one deserves cancer. MI Judy

My answer is the same as the others. Patient advocate. I was assigned one with my Insurance Company and she was a tiger for me. MI Judy

I completely agree with Ry. Everyone is different, and someone that has had your chemo regime may react completely different from it than you did. My chemo was Carboplatin and Taxol. I felt good on day one and two. Day three to five were a bit raw. Tired, sore muscles, and nausea. The medications for the nausea helped a lot, but because of the platinum in the chemo, the food tasted like metal. But it was tolerable, and ok. I did make myself eat, and even ice cream tasted like metal. LOL. But like Ginny said, it's a very short amount of time to be on it to allow you to live a very long amount of time. "You'll be fine" must seem weak to you. But long term you will be. You seem to be a strong woman, strong in character and will. You will be fine. Here's some things I did to help myself. #1 - hair loss. I didn't mourn it. As soon as it started coming out, I shaved my own head (quite carefully LOL). I found a lot of really cute hats at http://www.tlcdirect.org/. They are not expensive and are very comfy. I did buy a wig, but it was a waste of money. It itched and was hot, and I hardly ever wore it. #2. - constipation. Your doctor should recommend or prescribe a stool softener. Take it regularly no matter what. It works and will help you feel better. #3. - nausea - Again your doctor will prescribe medication for it. Take it no matter what. If it does not work, let your doctor know because there are lots of different medications for that. #4 - pain. You may or may not have pain. Most people don't, but I did. It was muscle pain. My body tolerated Vicodin well, so that helped a lot. Don't be shy about asking for pain meds if you need them. It's likely you'll feel tired. Try to get as much sleep as possible. Naps are a good thing always MI Judy

Good morning, Eric, I think it's amazing that you were picked for this honor. It reflects the hard work you've done advocating for us, and I am so proud of you. I agree that this lung cancer journey has provided me with amazing experiences as well. Ones I would not trade for anything. Congrats. I also loved what Alan added. To cry and laugh does make a full day. Judy I love that you are going to a bird sanctuary today. It will be lovely to see their beauty and reflect. Yesterday I felt like someone shot a cannon through my heart. But we have to move on, a little bit sadder, but wiser. I think I am going to phone a friend today and go out for some shopping. It's rainy and cold here, so some retail therapy may be just the ticket. The hurrican is Trina. I looked at the map and it's quite possible she will fizzle out before hitting the Keys. You may get rain though, which is not good for a landscaping planning day! Hope she takes a turn out to the sea. In light of the recent tragedy with Annette, I want to be sure to wish all of you much love, hugs, laughter and tears, and all good things to happen today. MI Judy

I needed to write tonight about Annette. This is a woman that I admired so much. In spite of the challenges she had with her Mom and her nephew, she persevered, and dealt with it. With each Daily Air, I looked forward to her entries, and her humor inspite of life's challenges. She was funny, and had a great attitude. Without going into details, her life took a dramatic turn recently. Her heart was broken. That is what she died of. A broken heart. I will miss her. She touched my life in a deep way. Today was spent with a lot of tears, and sadness. But I celebrate Annette. She was an amazing woman who I came to love. I have to believe that she is among the angels now and no longer suffering. Rest in Peace Annette. We loved you and will miss you. MI Judy

My heart hurts too. So incredibly sad right now. MI Judy

I went to your profile, and see that you are in England. I went to the Gilda's Club web site and they do have a couple of affiliates in U.K. I'm posting their international map of locations and affiliates here for you. I hope you two will check this out. http://cancersupportcommunity.org/hc/Co ... tions.html

One of the reasons they change "up" chemo treatments is that they don't want to exhaust all options right up front. The least invasive is the first choice usually. Try not to look at this as simply prolonging her life. We all have cancer cells. Some become active, some do not. We are all terminally ill and are going to die someday. But how we live today is what counts. She may be depressed about the progression to her liver and that is why she is sleeping longer and not hungry. But she should not lose hope. There is ALWAYS hope. Cancer is a word, it is not a sentence. We can live with cancer. MANY of us are doing that here and doing it quite well. I live my life one day at a time. I learned to do that after I got sick. Before I took years for granted. And the quality of my life was not good. Once I learned that each day is precious and to cherish it for what it is, quality of life went up a lot. As Steph pointed out, we could get schmucked by a Semi-truck today and it's over. We need to keep living well in perspective. Hugs to you. You sound sad. I didn't notice where you live, but I'd search for a in-person support group for you and her. Sometimes talking to others face to face can be of huge help. I go to Gilda's Club here, and have grown to love those in my support group. MI Judy

Steph, I just looked at the pics from the gardens, and explored the web site. What an amazing place. We have a garden and sculpture park here called Fredrik Meijer Gardens that is beautiful as well. I'll post the link here for all to enjoy. http://www.meijergardens.org/gardens_experience/

Good morning all! Hope you had a nice visit with Stan, Judy! Sounds like you are having a nice and content time as well. I was wondering why the typing print is so huge when I type here in the last two days. Then I hit submit, and it's normal size. Well, my getting older husband refuses to get glasses and can't read well anymore, so he changed the view to 110%! LOL! I woke at 6:30 too Judy. But we are different. You sit and slowly wake up, I get a glass of water, drink some and go back to sleep! LOL. I think you are more productive than I am. At 6:30 it was very dark, and pouring rain. R was gone already because he had to drive to Detroit on business today. The sound of the rain, and the chill in the house made it really easy to just curl up in the comforter and sleep for a few more hours. Now the sun is out. It's supposed to get to 62 today! That's awesome! Judy, thanks for reminding me. I've been meaning to change some things around the house to make it look more "fallish" and I think I'll run errands for the rest of the day and do just that! K, going to go! Have a great day. Mi Judy

Hi Ron, I'm with the others. Pat would not want you to be sad and lonely. My Mom fell in love after my Dad died, and it was a deep, sweet love. It was different from the relationship she had with Dad, because she and the man who married her were older. We were very happy for her when she found our Step-Dad and we loved him deeply. I wish the best for you! MI Judy

That's really nice Eric! We had a gorgeous day here. Sunshine, low 60's. Just awesome. Went to church, read paper, clipped coupons, grocery shopped and now doing some projects outside to continue our preparation for winter. Beautiful weather for all of that. We had a great time last night with the friends that came over for dinner. I think they and my R probably weren't feeling great this morning. They polished off four bottles of some wonderful wine. I had two glasses, and felt silly and stopped. Going to church with a hang over is not fun! R is going to sit in a tree stand for a while this afternoon, scouting that big buck! I've got a meat loaf prepared, with two squash halves begging for butter and brown sugar to bake in the over. Yum! I'm content too, Eric! Mi Judy

Hi again, I think you have every reason to be like Dad when you grow up! You are informed and ready for the next steps. I was your age when I was diagnosed, and here I am going on year 5 and healthy. Stay in touch with us! We have a fun post we do every day in the "Just for Fun - Off Topics" called that day's Air. So today would be Sunday's Air. Some of us post in there to get to know people's every day lives, and just to stay in touch as we've gotten to be pretty good friends here. I invite you to join us there. It's fun, can be a good place to just write, and get to know us. MI Judy

Hello Dulcinea! Welcome here. It sounds like you have a great plan in place! You've already had the surgery. That's a big plus. The fact that they could operate and remove it is huge. Same with me. Upper left lobe, and they removed it and told me the cancer was gone. They did recommend the chemo, "just to make sure" and I willingly took it because I needed to make sure! Chemo was not easy for me, but I got through it. One treatment at a time. It was okay. I even got to take two weeks off in the middle of treatment to go on a vacation to Alaska. We had a fabulous time. They are pretty good about making sure you are comfortable with pain medications if needed, nausea meds, and make sure you don't get constipated. Be sure to stay on top of that, as most of us suffered, not knowing about that little issue. Eat foods that taste good. If they don't taste good, eat them anyway, you need your strength. I want to assure you that everything is going to be okay. Come here and write when you are scared or having other issues, and we'll be here to encourage you through it. Judy in MI

Good afternoon! Steph, sounds like you did a good job! Cookies sound good right about now. We went out last night with friends, for a quiet dinner. We're having a couple over tonight for steaks. I was a lazy bum all week, so spent the last four hours with a vacuum, mop, dust cloth and cleaning solution in the kitchen. It looks so nice now! I'm amazed at how well I'm doing with all of that now. When I first had to start cleaning, I was overwhelmed and didn't know how I'd keep it up. Now? Easy Peasy. I just had to develop my own "system" and stay on top of it. I know it sounds silly to talk about cleaning your home this way, but this is a huge home, and not easy to clean. With two hound dogs dragging in dead animals, dirt, dog hair, leaves, etc., it's a big job to keep it up! I feel great now that it's all pretty again. R is outside getting things winterized. He plugged some holes that the wood peckers put in the side of the house, put away the lawn furniture, pulled the deadly (LOL) paddle boat out of the water, and blew leaves. It's a beautiful, crisp and sunny day. Perfect for getting chores done! Now I'm off to read and relax until our friends come over. I got the easy part with dinner. R is cooking steaks, and my friend said she was doing the side dishes and dessert. She insisted and I of course was NOT going to argue. LOL MI Judy

Hi LL, Once you have a treatment plan and know where she is at stage wise, you'll feel a lot more in control. I hope you continue to post here and let us know how it's going, so we can support you. Once you get the treatment plan, do let us know what it is so we can advise you on what to expect. Take care, MI Judy

Hi. Thanks Katie and Paulette for your support in my post. I did finally fall asleep and slept like a log!!!! So the vent helped a lot. It's good to be able to come here and share our hearts, especially when they feel broken. Judy, I've been to Pepe's on Caroline. It's a great place and I want to join you for lunch! I understand about the hair. The only time I had to deal with it, it came out in clumps, and it was very easy to shave it. But if I ever have to face it again, I'm not sure I'd do it as easily as I did the first time. Sending you a hug of support because you've been through so much, and now this? And yet, like you say, it's better than the word "Progression". Amen to that. Eric, you are so funny! I love your stories and all of your adventures. You have an amazing life, and you live it to the fullest. Good for you! You are a good example for the rest of us here. Paulette, it's so good to see you back posting again. I've missed you! Our temps are mimicking yours a lot! I'd say 60% of the leaves are gone now, but we still have some that have not changed yet, so Autumn is not over! Yesterday was a cold one, had a sweater on and another over that one, and then a big scarf just for good measure! Katie, I understand. The work we do is rewarding, and that's why we keep it up. But sometimes, it just is heavy and rough, and we need to sob in our pillow or write, or do something to lift the burden. I wouldn't change a thing that I do, but there's been so much loss lately, and it's not going to end soon, and that is just tough stuff. Now, I'm having lunch with one of my best friends at a quaint little joint in Ada. It's called The Gathering Place, and I don't know what they do to make their breakfasts so delish, I think they put Pixie dust on the eggs, they are so good! I'm looking forward to light banter and girl talk. Judy in MI

Thank you Lily. I don't know why others are not posting, but glad to see you here. As KW Judy has explained, it seems to ebb and flow. I hope the "flow" begins again shortly. If not? It seems that folks like you and I may not have much interest in sharing much anymore. That would be sad. MI Judy

I didn't know where else to post this, and only need to write because it is 4:20AM and I can't sleep and I need to just write. I'm not sure it's a good idea to be at Gilda's volunteering for 4 hours. Then I drive downtown to pick up a friend with lung cancer to go to a Spiritual Journey support group. Then we have dinner and go to our normal support group. Hence, it's 4:00AM and I am crying my eyes out and don't know where to go with my emotions. Cancer just sucks. I think because there are five of us dealing with lung cancer that is killing me. Four of them are not doing well. Me, #5 is doing well. As they tell their stories, they look me in the eye as they speak, like I have answers for them. I do not. Tonight, one young friend is dealing with end of life issues. He is 32. He has a 4 year old child. He is fighting for his life and he is not going to win. Another is older and begging for more chemo even when she knows it won't help. Her lungs are riddled with the disease, and she can barely breathe. She ran out of oxygen and we had to run to her vehicle to get another canister of oxygen to help her get to her car. The third was the one I drove, and she has been on chemo for 4 years. She broke her arm, and must stop chemo to allow the arm to heal and is scared to death about what that means for her long term survival. It just seems to go on and on. When they tell their stories, they look me in the eye, as if I have the answers. I don't have any answers. My heart breaks with every story. I just needed to write my pain out tonight. I'm sorry to put this on you. I love my friends, and it breaks my heart to know how their stories will end. I wish I had stories of hope to give them. But given their situations, I just do not. I can tell them about heaven and how their pain will end, but that is not what they want to hear right now. I can't blame them for that. I'd be the same way. Anyway, I needed to write and get this out. Maybe I can now sleep a bit. I love these people, and wish I could take their pain on and not have them suffer. Please do not be harsh on me. It's just such a bad place to be. And yet? I would not be anywhere else right now. They look to me for hope, and I can't deny them that. I offer that even when I know what their outcome will be. I'm just venting and letting tough stuff out. I hope my middle of the night ramblings do not upset you too much. With love, MI Judy

Good morning! For some reason I am up early for me. That is totally fine with me. I need to run to the pharmacy, and grab lunch before heading over to Gilda's Club. I'm going to try a new support group this week. They are starting a Spiritual Support through Cancer group at 4:30. So I'm working 4 1/2 hours and then going to that group, then supper, then my normal group. Yesterday they asked me to call a woman just dx Stage IV. She is oriental, and we had a language barrier, but with patience, and spelling words, we talked for an hour. I gave her questions to ask her doctor, and recommended medications to ask about. She is just a tiny little thing, just 5' tall and 103 pounds. I stressed to her that they will be watching her weight closely, and if she loses any, they may withdraw chemo. Advised her on some good fatty foods to eat to keep the weight on. I stressed to her that no matter what the doctors say, never lose hope. They told her she has one year to live. I explained that the statistic may be one year, but the good news is that she is a person, and person's are not statistics! It was a good thing, and she has my number to call me with other questions. Her sister is her caregiver, and I told her that she could call me too, but she said she does not speak English, so we wouldn't be able to communicate at all. It's pouring rain, blustery, and cold again. There are still some trees with leaves, but most are bare because of the extremely high winds we've had. I'm going to bundle up with scarves, and sweaters and a heavy coat as I head out today. Well, hope you all have a good day. MI Judy

Lily, I think you held onto those things until you finally got to this stage in your grief. And it's good to let go of the bad memories and remember the loving and good ones. Good for you! MI Judy