jeffg

Dear Charlene… Most people don’t talk because they don’t know what to say or they will say the wrong thing.I would be willing to talk about John with you all day, except I don’t know him, other than the courageous battle he fought. We have that much in common. Charlene start a journal and find a special place and just write to John every day. It has done many so much good. Grieving over someone who you loved so much is tough. Charlene, I haven’t even left for heaven yet, and my wife already attends a support group meeting for cargivers of cancer patients. It has done her a world of good already. She has learned life will go on with or without you. She has actually met and been invited to join another wive’s group through the support group. Charlene, your pain and grief is normal and the best way to combat it in my opinion, is take that first step. A lot of churches provide the support meeting s with open arms (no you don’t have to be a member). They have so many resources available and program to help you. There is a telephone number for each state that can provide you with infor of different support meetings that are free and open to all and run by a professional who has been there. Charlene, I feel so bad for you but at the same time I have to say again take the first step, just like you have on this site. Now extend it in to your local community. You will be surprized at how many open hands there are , more than willing to help. I say keep communicating with John by writing something to him daily. He’ll communicate back in his on little way . I really do believe that.
God Bless You!
Jeff

Hi Gavin, Sorry your Mom and Dad’s health weren’t up to the holiday. I pray the new year brings you and your family a brighter picture. You know we are all just an e-mail away. With the help of some pain medication my family had a good Christmas. I was falling asleep by the end of the day. It was arkward though explaining to the granchildren why Papa was sleeping in a hospital bed now. My two brothers are coming to visit for a few days the begining of January. I guess my sister who already visited must of told them she felt they should come and see me. Everyone wanted to keep taking pictures of me together with them and the children like it is was going to be my last. Who knows, I just may have to prove them all wrong. Hope is always in the air! You know Gavin it’s hard during this season for some of us,especially when illness is about. As the weather warms up, you’ll see a natural high of emotions for the better. We get trapped in that so called seasonal depression state of we don’t keep busy. Those long dark days and chilly nights some times get to us but we got to be strong and shake it off. Hope your Mom and Dad are up and feeling better real soon and you keep well also.
Jeff

Lainy and Ted……… So happy to hear the “CK” incinerated that spot. Happy Holidays to you both!
God Bless,
Jeff

Violarob in Texas… Glad to to hear your excellent come back. I wish I could say the same. Still taking Tarceva dispite the warnings as I feel it is doing me some good. Just got to stop all of these darn ribs from fracturing. Hurts just a little .Takes about three days of liquid morhine to kill the pain. I still remain hopeful this cancer feeding frenzy will stop. I’m doing a chest wrap to help with pain and hopefully allow healing we’ll see. Who knows for sure what coarse will be steered. Wish you the best.
Jeff

Sophie…. The fluid can or cannot come righ back. 20mg per day lasix is a very low dose. I have seen people taking 60 mgs per day 3 times a day. The forst drain I had lasted about 4 week s., the second drain lasted about 4 weeks, those two were sonagram guided. The third drain was CT guide. They took a picture shows where the fuid was and how much and asked if I wanted it drained? I said while I’m here might as well. There was practically nothing to drain. It don’t really hurt. and I preferred the ct guided but some doctors who have done it frquently can do with ease. They just get an entry point of between ribs make a dinky little incision insert the drain and start it draining by pullin back the syringe think -bob. My daughter anf wife watched it done the first two times with sonograp and third time I did it alone because I was having a radiation picture taken to mark the exact location to insert drain. They use a few drops of lquid pain killer as needed if you feel any pain. Then you feel pressure and think it’s hurting but it isn’t. Each time I asked is it in yet? They say yes it ‘s draining away. and I usually say, well someone could have told me and they laugh. Fluid and ascite can come and go away. Increase your lasix if your kidneys are okay. and drink plenty of water like 6 12oz glasse a day at least . It gets the fluid retention draining out through your kidneys. Currently I am dry of fluid retention. Also Take 800 mgs of Ibprofen four times a day as alot of times it is inflammation causing the fluid not the cancer or tumors. Take IBprofen with food or milk as it it can cause ulcers long term use . I use every other day or so or week on and weekoff. You do fell better and sleep better. less abrasivness going on. I had my primary care put in a standing order to drain every four weeks or so right now to maintain comfort. My second test of fluid came back clear of everything. bacteria growth and non malignancy fluid Just because you have fluids is not the end by any means, in fact advocate for it to be done . It’s a pain in the rear for them, but so what. They’ll be draining mine for another year or two if I can keep these ribs and bones cemented together. Go for it girl alot of our symptoms is not the end but livinig and dealing with them. When I start having major organs failing then I will get concerned and determine what I need to stop doing.
Bless Ya Girl !You can handle it. Piece of cake compared to what we have been through . BY the way have you ever heard od razzle dazzle Berry Pie? IF your having an appetite problem try it. Get it at Walmart frozen pie section. Really good if you like blackberries.

God Bless,
Jeff
Jeff

Ana… Be firm with the doctor and just butt in and ask what you would like to know. As his caregiver and wife I would like to know what all this means. If that don’t work ask to speak with a patient advocate and explain whats going on. What kind of doctor diagnosed your husband unresectable? If it was an oncologist ,then you need to get opinion from surgeon. Also talk with a radiologist oncoligist to determine if any type of radiation treatment would be beneficial as well. I know it is unknown and scary waters, but you have to be firm and advocate strong. You need to get second opinons or change doctors if your unsatisfied with the lack of communications. That is a big barrier to you being able to support your husband. I fall in the category of your Item 3 in your above posts and have battled this thing a few months shy of 10 years. If you want e-mail me direct and I will be more than happy to explain the ropes even if it takes a phone call to discuss it. Believe it or not there is a low and high grade of this disease which can make a difference on how fast it grows ot mets to other locations. We are all different and will respond differently for the most part, when dealing with this disease. We will all approach it differently with different treatments depending on on location and how far advanced. Again feel free to email me direct by clicking on email under my name. I’m here to help and explain to the best of my ability. But I always make it known it is your husbands/patients who has to make the final choice in what direction to go. Some people have elected no treatment period others have lost everything the ever owned including their homes because of the expense involved. Alot of tough choices to make in the near future and it’s sad but the expense part of it all has to come in to play as well for most. wish you and your husband the best.
God Bless,
Jeff G.

ToniaK….. I notice you are from MN. Cold weather and stay in side with furnace drys my skin and makes it itchy. I just do a good ole rub down with aloe vera and cucumber lotions. helps me. Don’t know if med is doing it. talk it over wirh Nurse and she what she thinks?
Bless Ya!
Jeff
P.S. Is she having any fluid retention with possible ascites?