Stephi

You might see if she can tolerate the boost shakes with ice cream...full of nutrients and calories..we also gave my mom some pedialite pops...kids don't mind them so they don't taste too bad.. many prayers for you and your Mom Stephi

Val, thank you so much for this..you have written what is in my heart..It does hurt so much when friends and family used to "show up" to p lay cards, eat, etc. but when you need them to come or call, take it on themselves to "do something" without being asked, and to be senistive to what is going on..well, so many just don't..It is almost like they have a fear that if they are around cancer, they may "catch it"... My dear Mother was dx with pancreatic cancer in Dec. and my husband has been going thru lung cancer treatments since April of last year...in between all that I had my 6th heart attack, this time to be put on a vent. for 4 days...Although we did have alot show up at the hospital, (my mom was in hospital, and I was taking care of and staying with her when I had the heart attack), at the beginning,many didn't come back or call for days...HELLO!!!!!!!!!!!! what is wrong with this picture???? Our immediate family stepped in with my son coming from Calif. and then switching off with our dear daughter in law....and I have 2 wonderful friends who I couldn't do this without..My mom and I are 1 hour away, so time spent on the road is alot.... Your blog gives us food for thought and an opportunity to send it on to those who have "asked what they could do" in the past...You have said it well..thank you so much Stephi

Karen, it is so good to see you post.. I have sent you a PM but hadn't heard anything. Please know that I continue to hold you up in prayer for peace and strength to get through this. my email: sfannaly2@aol.com Please send me yours. Stephi

Larry has had another MRI after increading pain to his hip. It was done without contrast, but they said they could tell there was no mets there, but that he does need a new hip. Also has sciatica in the same side. He slept the other day all day. Spent yesterday at the hospital and then today is sleeping. He is taking way too many pain meds for my taste..it scare me. He is still working most weeks, but we just never know when that could change. He has not gotten the gemzar n ow for 2 weeks due to the pain. He also still has alot of swelling in his legs from the gemzar. things just aren't going as I would like. I am trying to get appts. for him and my mom who has pancreatic cancer at City of Hope in Calif. asap. I will feel better for both of them after getting a second opinion. Has anyone else had problems with pain in the hips?? could this be something they can't see on a scan? he also just had a bone scan..it showed major bone degeneration, but no mets.. thanks Stephi

Sandy, please re read the above from those who have been there. You took such good care of your Jim and did all the right things for him. When the time came to do what was best for him ..you did. sending you hugs of comfort and prayers for peace.. Stephi

Debbie, I am so sorry for your loss, and that of your family. Please know you did all you could for him...and out of that, loving him is the best. Sending prayers and hugs .. Stephi

Jodi, I will be holding you and your family up in prayer. I am so sorry for your loss. I know you will miss her greatly. Stephi

good for you Debbie!!!! Maybe all that you have done so far will help him improve. As far as the power of atty. the patient co ordinator can do this for you. If your mom (or his wife) is still living, then she is automatically the one they will ask..but it doesn't hurt to get one with your name on it also, for them both..I am an only child and my dad is deceased. My mom has pc and while caring for her in hospital, I collasped with heart failure and a heart attack and was put on a vent for 4 days...it was frightening...since then I have one and my oldest son has one on my mom..I have one on myself and my husband with children as secondary. They must sign them though..so your dad will have to be better to do this. It only involves healthcare..a notary or atty. must do a regular power of atty. for banking issues, etc. I will keep your family in prayer sweetie, that he will improve, and you will get some rest. Stephi

Posted: Tue Apr 25, 2006 11:24 am Post subject: be firm Debbie, something you will learn here quickly is that you MUST be aggressive...the Drs. and nurses and hospital work for YOU>>>question them, if you have any trouble go to the patient advocate ASAP..do not leave her alone, as someone said...ask for a consult with another Dr. demand to see her test results and that they are doing the right tests...when she comes out os this make sure you have a durable power of atty. for her healthcare. sending prayers of strength and courage and throwing in a bit of "bite" for ya Stephi

Debbie, something you will learn here quickly is that you MUST be aggressive...the Drs. and nurses and hospital work for YOU>>>question them, if you have any trouble go to the patient advocate ASAP..do not leave her alone, as someone said...ask for a consult with another Dr. demand to see her test results and that they are doing the right tests...when she comes out os this make sure you have a durable power of atty. for her healthcare. sending prayers of strength and courage and throwing in a bit of "bite" for ya Stephi

Debbie, I am so sorry about your Dad. I don't have any medical info for you. Is he being treated in a Comp Cancer Center?? You may want another opinion. My husband's cancer is next to the aorta and on the pul artery also. He is being treated successfully. Your dad may have had a reaction to a med they gave him. I do know he should be on an IV..insist on that now. They may have to restrain him to keep him from pulling it out, but he needs to be hydrated. Please know that this place is a wealth of information..and compassion. Sending you prayers of courage and strength and hugs of comfort Stephi

Jodi, sending prayers of peace and comfort for you all Stephi

great news on no mets to brain....as far as drinking the water..my Mom who has pancreatic cancer says water tastes like metal and hates it...Dr. said it doesn't matter what they drink as long as they drink something....we have tried cranberry juice mixed with some sprite, she likes that alot...white grape juice sometimes mixed with something..all I can tell you is to try everything until you hit something he likes..but let me warn you, it seems they tire of it soon and you have to look for something else!!!! My husband has lung cancer and has never stopped drinking his almost 1/2 fifth of Jack Daniels a night!!! even when he had mouth sores....he was dehydrated 1 time in a year...my mom almost every week since Feb. If he begins to dehydrate the most important thing is get him to Dr. so they can give it via IV...dehydration will knock them down alot, and then if there is vomiting with it..well, let me tell you it "ain't pretty"...just don't let it get that far...if you take his BP at home take it sitting and then have him stand and take it again..if there is a big difference he is dehydrated. best of luck on continued good news for him Stephi

Sandy, I know how terribly hard this is on everyone. A what we think will be "simple" trip to the hospital turns into something frightening. I know you all will continue to fight this thing. My thoughts and prayers are there with you.. sending hugs, Stephi

Laura, thank you so much for letting us know what is going on. Karen is a remarkable lady. But she (and you) will need everyone during this very hard time. My continued prayers for peace and strength. Please let her know we are all thinking of them. I will PM her my phone number so if she wants to talk...love, hugs and prayers for you all Stephi

I have PM'd her, but haven't heard anything..My prayers have been with them both but fear something is wrong...Has anyone heard from her?? thanks Stephi

SO sorry to hear your Dad was not trreated with the respect he deserved by the DAV. I can tell you this is unusual. My husband is a Vietnam era Vet, disabled and receiving comp from the VA for lung cancer. If your dad served "in country: you might go to the VA and put in papers for compensation. When we did this, it was approved in a very short time. My husband can get medical from VA, and this might be an option for your dad also. I wish you the best. Stephi

Kelly, this is such heartbreaking news..My Mom was dx in Dec. with PC..My husband with lung cancer and me suffering a massive heart attack in Jan. It amazed me to see how many people replied that they had someone close to them with PC...there is not nearly enough research going on for this, like lung cancer. It does not have to be a short lived cancer though...Positive attitude and making up his mind to fight has alot to do with it. I am sending you 2 sites I hope you pass on to him It will give answers to alot of questions..also I am sending prayers to you and your family Stephi http://pathology.jhu.edu/pancreas_chat/ http://www.pancan.org/

Mitzu, this is never easy..I know your heart is breaking..Hang on to your wonderful memories, look at pictures and remember those times..hang on to each other...sending warm hugs and prayers of courage and comfort, Stephi

Dear Pat, I only just now saw this. You and Brian were such an inspiration to so many here. I always loved to read your wonderful encouragement to everyone..I know he was the Love of your life, and he will be so missed. Sending you healing hugs and prayers of hope for the future, the courage you will need, and the love of so many...for you and your family and friends Stephi

We had good news today with Larry..He had a PET scan..no lymph nodes lighting up and the tumor has not gotten bigger or moved!!!!! yippppeeeeeeeeeeee...we are due some good news..they want to scope him though this week if possible to look at something at the bottom of a lung..she said it looks like an infection that keeps hanging around.. My Mom is the same although she is able to keep food down..very tired though and still very yellow.. Leslie thanks so much for the istes I am using them now. Continued prayers for all our loved ones and positive light and belief in miracle healings.. Stephi

I've read some of the anguish here lately..my heart goes out to you all, and my heart feels what you feel. Life just shouldn't be this way. Larry is continuing to progress. We do a PET next Wed. and then him my Mom and I are off to MD Anderson from this war torn New Orleans. Yesterday we got the final results of all her tests, and I didn't tell her until then just beofre the Dr. came in. My heart was breaking and she said she was so sorry I would have to go through another cancer...that is "just her"..she said it is in God's hands and we are praying for the miracle we all deserve. I have done the same research on this as I did LC when Larry was dx. She has had major heart problems in the past and we always watched that closely knowing there was no cancer anywhere in our family. The tumor is very large in the head of the pancreas, so treatment is pretty impossible. Although we will do everything to keep her comfortable and do chemo and rad if she has quaility of life and chance of more years, if it will ust prolong a few months, then I will move her in with us and hold her close to the end. I have never wished I could die in someone's place, but I do now. She is the rock of so many..giving unconditional love, being unjudgemental, always the first there when someone has a need without having to ask her. She is my best friend, always has been...I am an only child...When told this news, her faith stayed steadfast, I pray mine can... I had called family and friends to tell them right after Christmas to ask for prayer for her..They have come out of the woodwork from all over so far visiting, helping..she wondered why so many, but then thought it was the holidays. Please, if anyone can direct me to a true support group like this one for pancreas..I have searched, but can't find one. Please keep them both in your prayers, as I do with all cancer patients and their families each night. I pray for all of us, and for a cure to this awful thing called cancer. Stephi

Janet, Please talk to him about getting a second opinion. MD Anderson and other cancer centers will even do this via faxing his latest test results, etc. to the Dr. I wouldn't take just one Dr. , who you don't seem to have alot of faith in, word as gospel. As others have suggested..you need to take ahold of his treatment..don't ever accept defeat without all the questions being answered and then only if it is the decision of you both... many prayer of healing and strength coming to you Stephi

Cindy, glad to rerad you are doing better..BUT wanted to remind you that in taking lasix, you need to be sure and get enough potassium!!! this is very important...also CHF doesn't just show up as swelling in hands and feet..in women also in our stomachs....I have been to the Dr. with CHF and because he knows I can treat it myself, he has let me go home....and come back in a few days. If you have ANY problems breathing...call 911 immediately!!! It is nothing to fool around with. I have an implanted ICD along with all of this, so I've been down this road a few times... take care and prayers for continued healing Stephi

Cheryl, I wrote the other post before I saw this one. It seems your Jake and my Larry have the same dx and in the same location. His is large cell though. I know how scarey this is..they told us Larry couldn't have surgery either. With the spread as it is, it seems to me they aren't being as aggressive as they could be??? This is only a guess. I know how hard it is to keep on these Drs. and the timing a lways seems to be messed up. Again, sending many many prayers for you and Jake. I pray for a miracle in his case..believe!!! Stephi