fillise
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Posts posted by fillise
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I thought I was prepared for mom's death. I mean, she was 80 and we had known that at some point she would go. But I now realize that while I was prepared for the idea of her death, I was not prepared for the reality of it. I suspect that is the way it is for most of us if not for all of us.
Susan
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Michelle--you go girl! I hope this brings you a sense of fullfillment and peace.
Susan
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Hi Liz,
Welcome to our little corner of the internet. There is much to learn here. I remember when my mom was first diagnosed, this was the first place that gave me any hope. We have many, many long term survivors and caregivers for long term survivors. We are all happy to answer questions and share our experiences.
Susan
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Ok, despite having been a caregiver for almost 4 years and being a moderator on this thread devoted to family members/caregivers, I didn't appreciate how hard that role is until last week.
I've been very involved in mom's care, but I live 500 miles away so I've been researching and advocating and offering support by phone and visiting as frequently as I can. But that's different than the hands-on 24/7 caregiving I discovered her last week of life. We were fortunate in that mom didn't need 24/7 care until the end. When I got the NC at 2:30 am on Saturday morning I got a few hours of sleep and went to the hospital to see her. I pretty much didn't leave, except to come home to shower, change and take delivery of the hospice equipment for three and one-half days. If she slept, I got a little sleep, but she didn't sleep much. The last night it seemed like every time I laid down she needed something. She wan't being difficult, she truly needed me to help her. But I don't see how one person does this for more than a few days. After 5 days I was about to cry I was so tired and so frightened.
So all of you hands-on caregivers out there have my complete admiration. Remember that this forum is a place where we can ask advice, share experiences or just come and vent when we think we can't take it any more. Trust me. Any of us who have been there will understand the need to vent and won't think any less of you for it.
Susan
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Hi Mandy,
We would love to hear about your dad. This place is as good as any. We are also here to provide support for you. Tell us your story too.
Susan
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Welcome Sandi,
Either of those chemo combinations would probably be fine. Looks like the trial is trying to determine which would be better as a first line treatment. If you did not respond to one you would still have the options of the other once you go off the trial. I don't see a down side as you will be getting treatments that have about the same level of effectiveness either way.
You can ask the physicians at www.cancergrace.org. I cannot imagine having gone through this journey with my mom with out the support from the Lung Cancer Support Community (this message board) and GRACE.
God bless you,
Susan
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Hello and welcome. There are many here (unfortunately too many) who have walked your journey and can pass along their wisdome and support. I lost my mom on October 13 so am myself dealing with fresh grief, though not for a spouse.
A little farther down on the main discussion board is a thread dedicated to those of us who are grieving. You are welcome to post anywhere you think appropriate, but I wanted to point you to that because that is where you will find many people who have also lost spouses and can offer their love and support. Trust me though, post where you feel like it and we will find you.
I am so very sorry for your loss.
Susan
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Thank you everyone. She was a very special lady and I'm so grateful to have had her as my mom. We got a lot longer with her than I though we should when she was first diagnosed. I am trying to concentrate on being grateful for all that time and all those wonderful memories.
Susan
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Judy,
I was with my father at the Dr. office earlier and had to stop before I was finished.
I think taxable income is what they use and the threshold, if I remember correctly was pretty significact to qualify for assistance. Mom and dad didn't have any trouble meeting it on their combined SSI and small pension. Having been self-employed myself I understand the difference between the amount of money that comes in and the amount that is taxable. When the money to run the business is deducted the taxable number is much, much smaller.
One other thing to keep in mind is that in the new year, I belive the cost for brand name drugs in the medicare part d doughnut hole will be reduced by 50%, so that should also help some. You will also get a $250.00 rebate for hitting the doughnut hole this year if you haven't already.
Mom got a very severe rash but also had a very significant response. They cut her dosage back to 1/2 and the rash went away and she stayed stable with the best quality of life she had since her dx for 8 months. I hope you get 8 years or more!
Susan
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Judy, once the initial rash subsided mom found Tarceva very easy to Tjardes. She was given a list of foods to avoid and had little trouble with diarrhea. Her Medicare part d covered it as a tier 4 drug meaning she paid one third till she hit the doughnut hole then full cost for one month and about $285for the rest of the year. But she got a grant and paid only a $25 copay and the grant covered the rest.
Susan
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It's over. Mom died on Wednesday morning. 45 months, 8 days after DX. Much longer than I thought we would have but still, much too soon.
Susan
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My mom's obituary.
http://www.legacy.com/obituaries/starne ... =145992344
Barbara Kent Fillippeli, 80, passed away Wednesday, October 13, 2010, after a 45 month battle with lung cancer. She was born February 25, 1930, in Greensboro, NC, the youngest daughter of Reese Babb and Oma Kent. She was preceded in death by her parents as well as by all of her brothers and sisters.
On November 6, 1954 Barbara married David Fillippeli. Their marriage of almost 56 years was filled with love and laughter. She was a devoted wife and wonderful mother to their two children.
Barbara was an active member of Winter Park Presbyterian Church where she served on the Board of Deacons and as an Elder. She was also active in the Presbyterian Women, serving in almost all offices of that organization as well as an Enabler for the Presbytery. In September, 2009 she was awarded an Honorary Life Membership to the Presbyterian Women (U.S.A.) Most recently she was part of a quilting ministry that made and delivered lap quilts to home bound members of her church. She loved sewing the quilts with her friends at church and she loved to see the look of happiness on the faces of the individuals who received the quilts.
Barbara is survived by her husband Dave and her two children, Susan Fillippeli of Auburn, AL and David J. Fillippeli, Jr. and wife Christi of Kinston, NC. She was devoted to her two granddaughters Ashley and Bethany Fillippeli of Kinston. The girls loved their grandmother's spaghetti sauce and apple sauce and Grandmother took great delight in cooking those items for them as often as possible. She will be missed by many friends and family members.
The family wishes to thank Dr. John W. Anagnost and the staff at Hanover Medical Specialists as well as Jill Finnegan and Wilmington Health for always treating her with compassion and for always listening to her and honoring her wishes. Also, a special thank you to her good friend Nancy McLean for her care and support during Barbara's illness.
A Celebration of Life service for Barbara will be held at Winter Park Presbyterian Church at 11:00 am on Saturday, October 16, 2010. A reception will be held immediately following the service in Chadbourn Hall.
Visitation will be held Friday evening from 6 to 8 pm at Andrews Mortuary Valley Chapel, 4108 S. College Road, Wilmington.
Memorial gifts may be made to Winter Park Presbyterian Church, 4501 Wrightsville Avenue, Wilmington, NC.
Online condolences may be made at www.andrewsmortuary.com
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Mom passed away on Wednesday at about 11:45 am. She had been in the hospital since Friday with an irregular heartbeat. She had a new set of scans last week and they showed that the cancer had literally exploded inside her. Her right lung was so full of tumor that she could not move air at all through it and was on the outside of the lung. It was also all over her liver and spreading in her bones.
She stayed in the hospital for three days and I stayed with her day and night. She came home on Tuesday because it was my father's birthday. We had a family celebration for him and she was clear and lucid. Tuesday night she started having trouble breathing. I had to call the hospice nurse at 2 am Wednesday because every breath she took sounded like she was breathing under water. We finally got her settled around 4 am and she went to sleep. Wednesday morning she wanted to sit with us at the breakfast table so I put her in the wheel chair and brough her into the kitchen. Then she wanted to go into the den and I wheeled her in there and got her situated on the sofa. I could hear the fluid again. And then it just stopped. Dad and I were with her and she just let go. She had asked me the night before how to let go and I guess when she was in her favorite spot on the sofa she got comfortable enough to let go.
I will miss her every single day for the rest of my life.
Susan
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Thanks everyone. Made the arrangements today to bring mom home tomorrow with hospice. Got out of the hospital for a little while to go take delivery of the equipment. I'm staying with her nights as she does not want to be by herself. Not able to do much else other than see to her right now.
Susan
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I got a call Friday that mom was rushed to the hospital with an irregular heartbeat. I drove up and am sitting in the hospital with her now. The cancer has exploded in her body. The tumor has filled the right lung and is now growing outside the lung. It is also spreading in her liver, ribs, pelvis, and thighs. Needless to say we are in a new stage. Last night she threw a blood clot in her right arm and they dud angioplasty today to bust it up.
We talked with hospice yesterday and when she comes home we will bring them in. It looks like we are at the jumping off point for the place we have been trying to avoid for the last 45 months.
I am staying in the hospital with her at night. Will keep you updated.
Susan
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Judy,
I'm so sorry to read about the progression. Cancer sucks. I hope the Tarcwva will do the trick for you. Mom had skin issues UN the beginning. She used Ulcering facial moisturizer and some stuff that came in her Tarceva starter kit. You can buy it without a prescription but I don't remember the name. I'll be praying UT kicks some cancer butt for you!
usan
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Take care of yourself Ronnie. Get some rest and her healthy!
Susan
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Thanks everyone. They drained a lot of fluid yesterday and she seems to be breathing better today although she is worn out from the procedure yesterday. She still seems to be determined to do the chemo week after next. I think I am going to try to be there when she has the chemo or just afterwards in case she needs me. I also want to talk with her Onc and maybe go talk to the hospice folks. I keep telling her I want to call so that she will live more comfortably. Judy, I'm going to tell her specifically about your mom's experience.
Susan
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Thanks Stephanie. I just talked to mom and they are going to drain fluid from her lungs tomorrow. Hopefully she will feel better when she can breathe.
Susan
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Mom seems to be rapidly losing strength. She is weak, short of breath and increasingly wants to stay in bed all day. For the first time in a very long time, I am frightened. She called the Dr. this morning and he had her come in for blood work. All that seemed to be fine. They are sending her for another chest x-ray this afternoon.
Last night I suggested that it might be time to start thinking about hospice. She seems so frustrated by how badly she is feeling and I am thinking that she might feel reassured if someone were coming by the house to check up on her. I think my father would certainly feel better. She didn't say much about the idea. My father tells me that she thinks she is dying and increasingly I think she may be right. She didn't say yes or no to hospice. I may have to call her oncologist to see what he thinks about it, but I think we may be coming to the day I have feared for the last 44 months.
It certainly stinks being 500 miles away.
Susan
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Randy,
Deb was so lucky to have you. I know she is smiling down on you now and telling you that she loves you.
Susan
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Kristen,
I hear your frustration. It's ok to be angry that the cancer has changed things. You need to mourn the old normal and learn how to live a new normal. Even if your father is cured the cancer will change things. You don't ever look at life in exactly the same way again. There are many aspect that will be painful, but there can be some positives as well. My prayer for you is that the positive will outweigh the pain.
Susan
ps come here when you need to vent. It can be a lifesaver.
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Lisa,
Let us know what you find out from the PET scan. I'm sure you will have lots more questions and we will do our best to help answer them.
Susan
My Name Is Tony
in INTRODUCE YOURSELF!
Posted
Hi Tony!
So sorry to hear about your dx, but glad you found us. We will do our best to help you with treatments and to answer your questions. In the beginning it can be tough to deal with the shock and all of the information you have to process.
Susan