Chemo

Pat….I can only echo Lainy’s comments: you set an example of how to face a difficult diseases in the most dire of circumstances. You have my greatest respect and admiration.

I also wanted to point out that Hospice organizations vary with their approached and if possible you might want to interview one or more prior to your signing up. You also want to make sure to meet the personnel. Unfortunately, in some instances, we have received some not so pleasant reports.
As a whole though, the good reports by far have superseded the not so good.
Hugs and love,
Marion

Dear Lainy and KrisV, Both of you have been so helpful in providing information to guide me through this very difficult time. As I mentioned, my husband who was my mentor, confidante, friend, guidance counselor, advisor and teacher died June 16, 2011. He taught me about courage in crisis. I admire the people who have faced so many ups and down and still do not give up. I plan on going into Hospice care, as I do not want to wait until I am unable to understand and make decisions. Yes, I filed my Statutory Will with the court house on Friday. It wasn’t necessary to file with Court, but I know the original will be kept safe. I am beginning to fill out the Probate Court forms and that will make it easier for my daughter. I don’t like to burden others with paperwork, attorneys, etc. and I was a legal secretary for 10 years prior to starting a small business with my husband. The other day I was watching a religious interview and the host was interviewing a man who had walked in fear most of his life. He was afraid to live his life. Fear had frozen him. He found the right church and became a Christian and was saved. He said “Now I am guided by faith and not by fear.” I thought these few words were powerful. His life has changed drastically and it’s as though he has been given a second chance at life. Sometimes you just never know that what you say can change a person’s life for the better. This site has given me the courage and guidance I’ve needed throughout this difficult time. And I thank you for taking the time in your busy schedules to respond and share your experiences! As always, it is appreciated. Sincerely, Pat from Linden, MI

Dear Lady, I am familiar with those nasty blood infections and I know they can make you feel like this is it! IF your ONC has suggested Hospice Home Care he will set up the appointment. Do NOT be afraid, they are like angels and will not only care for you they become your best friends. You can order anything you might need, example, for Teddy I had a hospital bed set up in the living room which was bright and airy and of course the big TV. When you reach that point I suggest the bed as you will be more comfortable and I bought a lambs wool sheet which added to his comfort. As we moved down the line I ordered a walker, a commode, and then a wheelchair. They even have a nurse who will come give you a shower. Of course your comfort is above anything else. You are very courageous and it sounds like you are getting your house in order so to speak to meet whatever comes your way. I have never been afraid of what is to come and after walking Teddy through his Journey I am convinced even more so. I realize you are just preparing your way for Hospice but you asked for some advice on it so I wrote a book, sorry. LOL You can ask me anything I am very honest about it all but if it gets sticky please email me. I am sending you a ton of hugs and love.

Dear Dianna, this is always the toughest decision to make, chemo or not. When my Teddy went through this he was 73 – 78 (5 years) and the biggest question we always asked the ONC was just what you did. Would you suggest chemo if this was your Father? The ONC offered Palliative Chemo and after 2 days of thinking, Teddy decided no. He was at that point almost 78. The ONC had said it would buy him a month over the 6 months he predicted. He was right on. But for the most part they were good months that maybe he would not have had as good. In my mind I also thought why chemo now as for the last 5 years of his life they said no, that it would not help. I would also prepare yourself to ask the ONC about Home Hospice. They sure are a big help and it would give you time to spend just being with hubby. Chemo brain is awful and fairly close to feeling like you have dementia. I am on Remicade which is like taking chemo, horrible side effects but the worst is when I can’t think as it gets so frustrating. My kids and friends all fill in words for me. I feel so bad for people with Dementia and Alzheimer’s as I can understand what they are going through. I keep asking everyone to please be patient with me. The other day I asked my daughter how it felt to exchange roles with me and we both laughed. Just please know that what ever decision is made is the right one!

Dianna –
To chemo or not to chemo is always a huge decision. I think most all of us have dealt with it at one time or another. My husband had a Roux-en-Y surgery which is similar to the Whipple but does not involve the pancreas at all. We had one positive node out of 7 and clear margins. Chemo was given to us as an option. We opted to go for it.
My husband is younger (50) but has diabetes and hypertension along with radiation from a previous cancer. It has not been a picnic dealing with the chemo…one of the side effects that can happens is “Chemo brain” and my husband has it pretty bad off and on. It’s similar to early stages of dementia…forgetfuless, illogical thinking, poor judgement and impulsiveness. Chemo can make the underlying dementia worse and then there are the concerns about other side effects such as the nausea/vomiting, weight loss and other problems.
I suspect you think the doc is “giving up” on your husband and I am not sure that is true. Choosing to opt for quality of live over quantity of life is just changing your goals…..comfort is the goal rather than cure.
I don’t know where your husband is in his dementia but if he is still able to make some decisions you may try putting it all out there for him and see what he says. He might surprise you.
But the bottom line is you do what you think it best. We can give input but you need to do what you need to do.

KrisV