palves

Thanks everyone. We just had a family day and that helped. Suprisingly my 15 yo spent time with us which was very nice. We got through it and now all the 1st's are over (I think). Paula

Tomorrow is one year since my dad passed away. We had his unveiling in early June. Today we celebrated my daughter's 10th brithday. Some tears from my mom but we are doing ok. I just lit the candle. Tomorrow I thought my mom would want to spend it with me and my family, but she is going to the cemetary and then to a friends for dinner. Guess I should have suggested some plans rather than played it by ear. Oh well. Hoping she isn't too upset with me for not going to the cemetary with her - didn't know she was planning to go. Can't go because I have someone scheduled to come to our house at the same time. In general though I have no pulling desire to go there anyway - figure I can miss him and think about him from anywhere. Am I wrong? Paula

Thanks everyone. I have been doing ok. Still a lot of second guessing. But I suppose thats normal. We have been surrounded bya lot of comfort the last few days. The next few will feel so strange I'm sure. I' m so used to running to do this or that, expecially the last 2-3 weeks. Kind of feel, empty, raw, not sure . want to crawl under the covers and hide for a few days I think. But mom, MIL, kids, I just can't .... I'll make it just need to take a step back and let the emotions rule for a bit. Paula

of fighting my dad lost his fight Saturday morning around 4:30 am. About 2 weeks ago I took him to the ER because the tumor in the brain (met from the lung) had caused some additional coordination/balance problems and he had fallen and couldn't get up. The result was that there was really nothing left to do. The liver had mets that had increased, even with surgery or radiation functionality wouldn't necessarly come back. Decision was made to send him to rehab for a bit to see if he could get a bit more strength in his legs / arms to assist w/ transfers. he really wanted to go home. He went downhill from the time he got to rehab - needed oxygen (never needed it before), began to swell, and developed pneumonia. He really wanted to go home and we would have taken him home this week. I feel really horrible that he didn't get home and that he was alone last night (we weren't told before we left last night that it looked like this was it although we knew he was struggling). While the call at 4:30 was a surpris it really wasn't a surprise. Feeling all kinds of emotions sadnss, relief, and guilt ..... Thanks everyone for being there for the last few years, although I didn't write much, I did ask for advice on/off and everyone was so giving. Appreciate and love you all... Paula

Thanks everyone for your great advice. I've called a number of hospices (thanks Ned) and have a few more to call. My mom called a few home healthcare agencies. Does anyone know if Medicare covers home health care if Hospice is also called in? Paula

Hi - I need some help in figuring out what to do about hospice. We had someone come talk with us in the hospital from someplace, but now I understand there are more than 1 hospice type programs in each area. How do I go about finding out about the different hospices in a given area? I just did a search, but only came up with the visiting nursing association. So I'm not sure if I am searching for the right thing. The real question is what is given by each hospice program (and what one qualifies under the insurance plan) - is it standard to just be allowed up to 4 hrs per day of a home health aide? The one program we talked wtih said up to 4 hrs a day, and then another 4 potential from a combination of home health aide, spiritual advisor, volunteer and visiting nurse. How ofter should we expect a visiting nurse to come? We were also trying to fgure out if he goes into home hospice can he later switch to in patient hospice? He really wants to go home (he is in rehab now trying to get him to strengthen his legs). And I want to honor his wishes, but my mom cannot care for him. There needs to be a way to get someone to care for him 24x7 so that she does not have to. The only way that would be wold be for us to pay for it or for him to get admitted to to in patient hospice. Another question, for a home health aide - right now its pretty much taking 2 people to move him in/out of bed/wheelchair. Can one person realistically do this? How will that work if not, will he be bed bound then? Will my mother, me or my sibilings be required to be there at all times to help? My brother works, my sister is in school, and I'm job searching/interviewing and can't put that aside. I just feel so confused. Any advice is well appreciated. Thanks Paula

Thanks everyone .. right now we have faxed the reports over to Sloan. Ginny thanks for the PA recommendation. I'm going to discuss that with my mom tonight. Thanks Bunny - got your PM. Definitely will check that out ...

Anyone hear of Dr. Chandranath Sen out of St. Lukes? or Dr. Vivian Tabar out of Sloan Kettering? My dad has mets to the brain - cerebellum. Recommendation is to wait for blood spt to reduce on its own or possibly look for surgery. Need a 2nd opinion. Please provide any suggestons. Direct email is palves@optonline.net. Regards, Paula

Anyone hear of Dr. Chandranath Sen out of St. Lukes? or Dr. Vivian Tabar out of Sloan Kettering? My dad has mets to the brain - cerebellum. Recommendation is to wait for blood spt to reduce on its own or possibly look for surgery. Need a 2nd opinion. Please provide any suggestons. Direct email is palves@optonline.net. Regards, Paula

My dad has severe swelling possibly due to the chemo he is on. He is on diretics for it, but its not helping much. His protein levels also came up low? Has anyone experienced this? What did you do to raise theprotein levels? Is it dangerous? Are there any meds? Thanks in advance

Can you PM and let me know if you are treated at Fox Chase or elsewhere and perhaps are you happy and who you see. Looking for alternatives. Thanks Paula palves@optonline.net

My thoughts are with Julia and Aarons family. This makes me so sad. If I had known I would have tried to visit - I don't live that far from there. A tragic loss. Paula

I am so sorry to hear this. Ry I always get such inspiration from you. Just know that I am thinking and grieving with you. My thoughts are with you and your entire family at this very sad time. Paula

Anyone have any experience with these drugs in a trial situation? Dad has 2 possible trials that he can participate in (Phase 1) as the Alimta failed him. Trying to make a decision. Velcade seems promising - its been FDA approved I believe for multiple myeloma (sp?) Any thoughts well appreciated as always. Paula

Mazel Tov and a L Shana Tova What a great way to start the new year