Jeannie0613

The love of my life and my darling husband, Jim lost his battle to this horrible disease on January 30th. He fought with everything he had. Just couldn't fight any longer. How do we even go on without him? I wish I knew. I thank god for our three beautiful children because without them I dont' know how I would be doing this at all. I hurts so bad. I miss him so much.

Oh you must go.... Mackinaw Island in upper Michigan by the Mackinaw Bridge. All horse and buggy or bikes, no automobiles aloud on the island. It really is a must see place in Michigan if you ever come to Michigan. Very nice, very relaxing!

Jim and our daughter last year Jim and I last August

Top pic our family just last August right before everything changed Our recent Mackinaw Island Trip Our two oldest on the way to the Island

Jim and I and our children

Oh and Gloria.... My husband, Jim, got to where he couldn't keep food down at all so Ensure is all he could tolerate. He started loosing all kinds of weight. Well, I could not have that so I just started making ice cream drinks. I got Breyers chocolate ice cream poured in two cans of ensure(instead of just milk) and added protein weight gainer as well. It worked he started gaining some of his weight back. Now he eats everything in sight but at this point he is at a stand still and I believe that is due to the chemo. Because he still has shakes, smoothies plus big macs My honey has an appetite and at this point I let him eat whatever his heart desires. He used to weigh about 240 he weighs 169. At his lowerst he was down to about 150. Try anything. I even would make smoothies. He loved strawberries, bananas, pineapple, raspberry and yogurt. I would make a couple of these a day. He still loves them, even though now he can eat. Keep trying and don't give up. You will find something.

Hello Gloria I want you to know that my husband has to go in every day following chemo for the WBC shot. We get off maybe 1 day a week. He has been on texotere and carboplatine since January. The last two treatments(which by the way are given to him weekly) his platlets have been low so he now is getting shots for that as well. So yes, I am with you, and I really haven't heard of many people this happens to. My husband also had the eating issues....megace did not work for him. They even tried Marinol. That did not work either. The only thing that keeps him eating and keeps the food down is the steroids. He is now weaned down to 1mg. I think that will continue until the chemo stops(which we are hoping another 3 weeks and then finished, finally!) Good Luck and I hope you find something that works for him. My thoughts and prayers are with you, your family and your Dad! Tell him to keep fighting and stay strong. Strength and determination can win. Jeannie

Hi Thanks everyone! Ned, his eye problem was only corrected with the prism lenses the doc prescribed. A muscle in the eye has been damaged from either the bells or the radiation(??) they are unsure. However, with these glasses he can see normally again. They aren't dry or itchy either. I just think they were working way to hard and now we have temporarily fixed the problem. They said once he gets through chemo and is up for it they can do a surgery that will correct the problem. Thanks again and I want you all to know just because I don't post often I am always following up with the board. I read the board, I cry, I laugh, and I pray with all of you.

PET scan shows...no sign of cancer anywhere! Everything is gone. Mind you this was our one and only pet scan. They never really felt the need to do one. We were scheduled many times but then cancelled for one reason or another. We are in shock right noe and thanking god and our wonderful oncologist!!! They are going to continue his weekly treatments for another 4 weeks or so to be sure. His CEA level is all the way down to 2.3 too. All test look great..normal for the first time in months. We will repeat Pet SCAN in a few months. I never thought we would make it through this..Hold on to hope and keep the faith. Jim has been through hell over the last year and never once gave up. He is my HERO!!! When all this started he promised he would fight with all he had and I believed in that. He has to much to live for and would not let the beast win... THANK GOD!!!!

Gracie I am so sorry to hear the sad news. I was pulling for her and I truly thought she could get through this. My thoughts and prayers are with you and your entire family. Jean

Thank you everyone! PET scan is scheduled for June 3rd. He has been doing okay. He is down to 1/2 mg steriod(appetitie has decreased). I am really pushing the ensures and he is eating small meals and drinking those up. The vision troubles are still rough on him but alittle better. We see the eye specialist tomorrow. I will let you all know, send some extra prayers our way.

My husband had the port put in his brain, it is called the omaaya resevoir, and it worked.I am not sure if it is the same type but it really isn't as bad as it sounds. He was so sick when they put that in, I mean really sick. Sleeping all the time, vomitting and also a inpatient in the hospital. They gave him blood transfusion, vitamins though and IV etc. and got him stable enough to go through surgery. He did amazingly well then received 4 treatments of methotraxate (chemo)through that port. I know this was chemo going to his spinal fluid however, I would think this is similar. This was for the diagnosis of menengial carcinomatous. Don't give up and keep on fighting. Believe me, my husband has been so sick and we thought, at times, that he would never pull through and is here today, 9 months later, and his CEA level is back almost to normal and he gets better everyday. Hang in there!Its a battle that she can win. Remember that!

We saw the oncologist today for Jims vision problems. He said he believes it is from the chemo but not totally convinced that is what is going on. He said it is also possbile that the steroids may have caused this as well. His eyes are so dry and red and just irritated so badly. He gets blurred vision as well. The only relief he gets is if we bandage his left eye up totally. The doc is sending us to a specialist o find out exactly what is going on. He also gave us his latest blood test results and MRI. EVERYTHING IS LOOKING GOOD! Nothing new and the spot that was on his lung has shrunk in size. He only has the one spot. It has not spread anywhere else..THANK GOD!!! His CEA level has dropped and is down to 5!!!! Which normal is 2.5 range. WE are outta of minds excited. This means the treatment is working. The doc finally ordered a PET scan, that will be next week. To date we have never had one. I am real anxious about those results. Possible remission is what we are hoping for? He said the vomitting (which really wasn't alot) compared to what it was months ago is normal for having chemo and weaning him off the steroids. He goes to 1/2 a mg of Decadron starting tomorrow and then off completley. Once he is done with that he will be taking no prescribed meds. To me that is good, right? I mean he has never had any pain so never had to take any kinds of pain pills and really only needed something for the nausea and heartburn. We are lucky as far as that goes. Anyway, I am hoping and praying we get good results from the PET SCAN. I am positive and so is my honey! He will continue his fight and be the winner of this one, that I am pretty confident of. He has way to much to fight for. He is only 44 and we have three small children who love and need him as much as I love and need him. Anyway, I just wanted to share some good news for once. i

Gail I was reading your post as well....how is his breathing today. Gosh, I worry so much about everyone. Please tell me he is doing better.

I called. The nurse said she would give the doc a message but otherwise he will take a look at him when we come in on Wednesday for chemo. I just feel brushed off lately when I call. It is so irritating. Thanks I will keep my close eye on him and if I have to we will go to ER.

Hello everyone. It has been awhile since I have posted but I continue to follow up on everyone. I learn so much from this site and I thank you all. We are still going through so much but for the most part everything has been on the up with Jim. He has been having chemo once a week(texotere and carbolatine) since January. He also had the 6 treatments of methotrexate for the menengial carcinomatous. Which, by the way they say is now gone(no signs of it). THANK GOD! He was eating really good, huge appetite in fact, and never got ill from the chemo. They originally started with this chemo once a week(small dose) because he was so weak and unable to keep anything down at that time. Now, the oncologist says he is going to continue the once a week treatments since they seem to be working and he is tolerating them beautifully. A recent full body MRI showed the spot on the lung has decreased in size, the tumors in the brain have shrunk and are no longer a concern. My concern today is....they have been weanning him off the steroids which over the last couple days he has thrown up, and his vision is so bad. His EYES are driving him crazy. They are red, irritated, dry. Nothing seems to help. We have been putting drops in, taping them up, tried patches everything and nothing is helping. He can't even look at me for long his eyes just start kinda rolling. It is so scary. Anyone ever experience anything like this? I also have another concern.......the doc did tells us chemo is going to continue long into our future, my question.....when is it to much? I just worry that he is having this every week and now I see things such as his eyes, now appetitie. Is his body saying this is enough? I just don't know what is happening and I never seem to be able to get these questions answered from our doc. Since I last wrote, Jim has also been going to physical therapy three times a week too. He is now walking with a little help from his cane. No more wheelchair and very limited use of his walker. That alone is a miracle. He was unable to walk. Everyday he was getting stronger. Well, up until these last couple of days. I feel like the chemo is taking its toll now or could it be the steroids? He is only taking 1 mg a day now. I don't know. Anyone have any advise for me. Just over the last couple days, his vision, his appetitie, and his energy level has all changed. I am worried. I will try to update our profile later on. So much has been going on but mostly good and I want you all to know about everything. Thank you!

Hi All and Happy Holidays. My Jim is in the hospital again. He has been in since December 3rd. Alot has been going on since I last logged on. He came in for the follow up CT scan of his brain and they admitted him immediatley for dehydration. They did a few tests while he was in since he started feeling so poorly. He was having back pain, dizziness, ears ringing so the doc ordered a MRI of his spine a less invasive then a spinal tap(which they wanted to do). They found a tumor on his spinal cord and called it Carcinomatous Meningitis. Not good news. However, Jim continues to be strong and remains totally positive. Now, he has been on coumadin for weeks due to the last time he was in for blood clots. So now, this is a problem. He needs to have something called a Ommaya Reservoir place in his brain and with this he will receive chemo for this now newly frightening diagnosis. He cannot have this until his INR level is back to at least 1. They agave him 4 bags of plasma and it finally helped. Surgery was a success. Jim is doing great. This is now been two days since surgery and he is funnier than ever and ready to go home with me and the kids for the holidays. First, he has to have chemo on both his lungs and his spine(through the ommaya)on Christmas Eve morning. The plan is to go home immediatley after. This will be his first experience with chemo. We are frightened. I have to run I will re do my list of what has been going on soon. The docs just walked in.

I did the timeline...lets see if this worked.

Hi Again Today was a good day for us. Jim is doing so much better. The doctors came in and said if he wants to beat this or at least have a fighting chance he has to eat. It is all about Nutrition. I have been trying to tell him that from day one. The new oncologist just confirmed it today for Jim. He just keeps saying food is not tasting good, or his stomach feels full. I am getting so irritated with him about this. I actually lost it a little today on him. Telling him that from where I am sitting it looks as if he is giving up. If he can't do a simple thing like eat MORE, regardless of taste or texture, than he must not want to fight as bad as I thought he did. I felt as though he was just giving up. The depression seems to be setting in. He has been so strong up until the last couple days. I real trooper. ALWAYS POSTIVE. I am not seeing that today. Until dinner that is....... whatever I did say, worked cause man he chowed for dinner and not one complaint. I told him he has to fight not only for himself but for our children and for me as well. We need him as much as he needs as. He thanked me after dinner. I am glad he did cause I was feeling bad for my short temper earlier. It was a trying day but he is doing ALOT better. The oncologist and the pulmonary doc said he never had pneumonia and the shingles were not shingles after all. I did not mention a whole lot about what really has gone down but alot of misdiagnoses has been the biggest part of why Jim is where he is today. I will work on posting the history. How do I post the history time line of what has been going on since day 1. Do i just do this on word or something and then copy and paste or is there a standard guideline that I have not spotted yet on this site. I am so happy I stumbled across this site last night. Everyone has been so amazing, helpful and so kind already. I look forward to talking to everyone. Talking to people that actually know what we are going through helps so much. When I woke up this morning and read all the replies I was thrilled! I thank you all for that. Thank you so much!

Hi everone My name is Jean. My husband was diagnosed with lung cancer that has metasized to his brain and bone, Stage IV. He is 44 years old. He has been healthy his entire life. This all came on so fast. We came home from a family vacation and I noticed his mouth looked droopy. We we made an appointment at his family doctor and they said it was bells palsey. We have three small children. He is a fabulous husband, and even better father. HOW could this be happening. He was not even a smoker. I AM SCARED TO DEATH. I am trying so hard to be tough for him. Usually it is him being the tough one so this is really hard for me. I love him more than I could ever even begin to explain. This man is my whole being. I need, he needs, a miracle. I cannot even begin to imagine my life without my best friend, my heart and soul is him. The bells palsey ended up being three tumors that were bleeding in his brain. So much has happened to us over the last several months. I do not even know where to begin. I just want to hear positive stories, I am so tired of all the negativity I hear from the doctors. We have been to several places now, several opinions. They all base it on the original records. Noone has ever run any tests of there own(is this normal?). He has had radiation(14 treatments) to the whole brain, and 14 to the hip. We have been to Henry ford hospital, William Beaumont Hospital, Karmonos Cancer Center and Cancer Treatment Center of America. We actually just got back last Tuesday from a very disappointing trip to CTCA. They told us he could get the same treatment here at home so go home basically and let them do it. Very disappointing. We were scheduled to start chemo at Karmonos on the 9th of Nov. We thought we would check out one more place for another opinion(CTCA) before we began chemo. We arrived back home on Tuesday night and by Thursday am he was not doing to good. I took him to Karmonos(DMC ER) and they admitted him for pneumonia and shingles, ( he probably caught that on the germy plane or at CTCA?? who knows but not good). He was doing so well before we left. Eating, daily, laughing, almost his old self. We got back from Illinois and BAM, he is sick. Anyway, he spent a few days in the hospital, he seemed better so they sent him home sunday. We got home and all he did was sleep. Tuesday am when I awoke I found him struggling to breath and I immediatley called 911. So now here I am sitting in the hospital watching him sleep and closely watching his breathing. I have not left his side. They found two blood clots on his lungs and one on his leg. He was in ICU for two days. We just got down stepped to a regular unit, where the nurse just pops in whenever she feels the need and I am terrified to even leave(thank god my mother is taking care of our children). He really seems better but the docs are sure doom and gloom. Although, one good thing......they did a recheck on his brain and the tumors are no where to be seen! AMAZING! That is such good news. The radiation worked now it is time for chemo. He just needs to get better before we can start that. He was so bad when he was an ER on Tuesday. I was starting to believe those docs and started to get really freaked out. He promised me and the kids he is going to beat this. I beleive him, I really do. But this is so scary. He has way to much to fight for, he has his health otherwise and age, right? Well, this is just a small touch of our lives. I could honestly go on to write a book about what has happened to totally change our lives in these past 2 1/2 months. I need support..please help me out here. Thank you all.