Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
By the way, I also called hospice this week and told them where my mom is as far as treatment, and the nurse explained to me how they handle medications for conditions that come up. If there is an infection, of course they'll give antibiotics. They'll give Lovenox shots. She wasn't sure if chemo for pain relief would disqualify Mom, because sometimes that's allowed, if it's truly for pain relief and not cure. But she felt Mom wasn't ready for hospice if she was still more in a treatment frame of mind. She suggested I have a conversation with Mom about it, looking forward. I can also talk to the doctor privately about when he'd recommend hospice.
What I don't want to happen (and I may not be able to avoid it) is for her to have an event, such as liver failure, that would mean taking her to the hospital. If she's not yet on hospice, she'd go to the hospital and that would be that. If she is already on hospice, she could die at home instead of being treated, which is what I know she'd want to do.
I'm glad to read your update. I know life is very busy for you; & with cancer; you never know which kind of busy it is; good busy or complication busy.
I assume the hospice doesn't have something like the transitions program that my dad did?
My dad was never in the hospice frame of mind; even the last day he was alive. He was aware of what day it was & that he needed to get to the hospital to get his blood drawn. I wish my dad was more of a talker but he was not. Any feelings he had of terminal cancer were said because I started the conversation.
My dad did have an infection; I really despise the doctor he had... They removed his PICC line which made his arm blow up like Popeye. My dad begged this Dr to admit him; he said no. He wouldn't even order an ultra sound.. This was something I did not know back then; my gut was telling me to take him to his other cancer center & let them admit him but he said no; let's wait a few days. His youngest daughter decided to go behind my back & put rags on his arm which I was told not to do because if it was a clot & I picked the wrong of hot or cold; it could kill him. He never got out of bed again; his body started shutting down.
Things can happen at any time; so be prepared for that. Cancer is such a roller coaster.
~Hugs
By the way, I also called hospice this week and told them where my mom is as far as treatment, and the nurse explained to me how they handle medications for conditions that come up. If there is an infection, of course they'll give antibiotics. They'll give Lovenox shots. She wasn't sure if chemo for pain relief would disqualify Mom, because sometimes that's allowed, if it's truly for pain relief and not cure. But she felt Mom wasn't ready for hospice if she was still more in a treatment frame of mind. She suggested I have a conversation with Mom about it, looking forward. I can also talk to the doctor privately about when he'd recommend hospice.
What I don't want to happen (and I may not be able to avoid it) is for her to have an event, such as liver failure, that would mean taking her to the hospital. If she's not yet on hospice, she'd go to the hospital and that would be that. If she is already on hospice, she could die at home instead of being treated, which is what I know she'd want to do.
enjoy all the time you have with your mom and eat as much Chinese food as you can handle; nothing can lift a person like their favorite food.
Thanks for updating us, keep us posted and we do realize how busy you are. Hopefully you and mom can keep your spirits up.
Brian, that flightless molecule is intriguing. I've also heard about a vaccine that is being developed to prevent pancreatic cancer. I hope some of these findings come to light and are approved and available to help people in the future. I fear my mom is too far along to be helped by much, except the love of her family.
I brought over my little digital recorder the other day and said Mom, why don't you tell some stories of your childhood? I told her I'd download them onto the computer and type them up and make them into a book. She had been planning to type up her memoirs when she moved to Florida, but now she can't do that. Well, she lit up at that idea. I went back today to pick up the recorder (I use it in my job) and she had already told five stories of her life. One was about how she sat on the curb ("the gutter") in the Bronx when she was a little girl, sat there with her best friend and they sewed outfits for their little dolls. They kept their dolls and thread and thimbles in cigar boxes that they got from her friend's dad's candy store down the block.
She also told stories about one of her birthdays, and how she met my father, and how she went to City College and was in the first class of women who graduated.
She's weak, her voice is weak, but she's in good spirits. I think this project is giving her some sense of meaning and purpose.
Third chemo today. She was in good spirits except for one thing -- she was upset that clumps of her hair had fallen out. She complained to the nurse that the doctor had told her she wouldn't lose her hair, which is not true. The nurse and I reminded her that he said not everybody loses their hair from these drugs, but some people lose some hair, and she might only have thinning. She said that if she loses any more hair, this is it, no more chemo. But she had the treatment. I'll have a kerchief for her next time I go over.
Otherwise, she is in no pain and very chatty and busy with things. We're going to the library on Sat. to get out some large-print books. She also asked me to bring over her tapestry needle so she can sew her crocheted blanket together.
And she's asking the doctor if she can have cataract surgery (which she was supposed to have four months ago, until she got waylaid by cancer). I doubt he'll recommend it, but I'm not going to discourage her from asking.
Third chemo today. She was in good spirits except for one thing -- she was upset that clumps of her hair had fallen out. She complained to the nurse that the doctor had told her she wouldn't lose her hair, which is not true. The nurse and I reminded her that he said not everybody loses their hair from these drugs, but some people lose some hair, and she might only have thinning. She said that if she loses any more hair, this is it, no more chemo. But she had the treatment. I'll have a kerchief for her next time I go over.
Otherwise, she is in no pain and very chatty and busy with things. We're going to the library on Sat. to get out some large-print books. She also asked me to bring over her tapestry needle so she can sew her crocheted blanket together.
And she's asking the doctor if she can have cataract surgery (which she was supposed to have four months ago, until she got waylaid by cancer). I doubt he'll recommend it, but I'm not going to discourage her from asking.
Thanks so mcuh for the update. It sounds like things are going pretty well for you and her right now. That is a positive for everyone. I agree, let her ask about the cataract surgery. it is very simple, only takes about 10 minutes and maybe he will agree, who knows...
I just found this thread. For quite some time my daughter who is age 39 has had a cyst on the lobe of her pancreas. When they found it, Barnes Hospital doctors wanted to take it out - but since the tests indicated it wasn't cancer, her insurance wouldn't pay for it.
She has to go for tests every 9 months and this recent one showed many changes and she also has had back pains which she thought were from her back since she has had 3 back surgeries. The doctors are now worried the changes and the pains perhaps are due to cancer. She is being scheduled for surgery as soon as they can get the two surgeons scheduled together. They are going to take out 2/3 of her pancreas. Dang insurance companies. I think the doctors should have pushed for surgery when they first found the cyst instead of just watching it.
She is a doctor herself so knows the consequences and the statistics and she is scared. And so is mama (me).
I can tell you all care when someone posts here. As I know more, I will post again.
I just found this thread. For quite some time my daughter who is age 39 has had a cyst on the lobe of her pancreas. When they found it, Barnes Hospital doctors wanted to take it out - but since the tests indicated it wasn't cancer, her insurance wouldn't pay for it.
She has to go for tests every 9 months and this recent one showed many changes and she also has had back pains which she thought were from her back since she has had 3 back surgeries. The doctors are now worried the changes and the pains perhaps are due to cancer. She is being scheduled for surgery as soon as they can get the two surgeons scheduled together. They are going to take out 2/3 of her pancreas. Dang insurance companies. I think the doctors should have pushed for surgery when they first found the cyst instead of just watching it.
She is a doctor herself so knows the consequences and the statistics and she is scared. And so is mama (me).
I can tell you all care when someone posts here. As I know more, I will post again.
Please let us know her progress and good luck. As for the insurance, what kind would not honor a test to determine whether it was cancer or not.
A quick update for all on my mom. She had her 4th chemo yesterday and continues to feel well. In fact, in the past two weeks she has improved markedly. Pain is being well-managed, and the only time she has felt any is when the patch is on the wane and a new patch is put on. She has been needing an oxycodone for the overlap period. I talked to the nurses about it, and they felt that it was not yet time to increase the patch, not until she regularly feels breakthrough pain over a period of 2-3 days.
We've made trips to two beaches, a park, and the library. She is also going on field trips with the assisted living facility, on their bus, when she feels good enough. Her appetite is good - in fact, she's now complaining about the food there and missing her usual foods that she made at home. A good sign, I think. Yesterday I brought her a hard roll with cream cheese and chives on it, an old favorite, and some cookies she likes.
She has been using the walker almost exclusively for the past almost 2 weeks, and sometimes walking even without the walker! Her legs are strong, but her stamina is not there. She gets winded after the slightest exertion and must move slowly. But it was great after I took her home from chemo and she walked to her room, and then she walked me out to the landing on the second floor without her walker to say goodbye. Like old times!
The doctor checked her lungs/blood work to see what the shortness of breath was about. I was afraid the cancer had moved to her lungs, but he said her lungs are clear and her oxygen level is quite good. Red blood cell count is also good.
Next Thurs. we see him for a followup visit (no chemo) and see where we go from here.
In her free time she is sewing a blanket and has recorded 15 life stories for me on the tape recorder. We are going back to the library tomorrow for more books.
I can't believe that two months ago Mom was almost completely immobile, in constant pain, not eating, and miserable. I didn't think she'd make it this long. She is getting excellent care by the nurses and aides at the facility, plus the director checks in on her every day, and so does the house dog. I just got back from 5 days in California at my daughter's wedding and was able to enjoy myself without worries.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
If she is already on hospice, she could die at home instead of being treated, which is what I know she'd want to do.
