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I also wanted to post this wonderful tribute my husband created for my moms service. It was beautiful.
http://www.youtube.com/watch?v=j9LEXcqXTNI&feature=email
My husband wanted to get some video of my mother talking about our wedding day for our wedding video (that I am hoping to have the final edited version, before our 10 year anniversary ). However, he used it in this. You would think it was made for this, but it wasn’t.
I do enjoy having a visual of the people on this board. I do think of you all as extended family…a wonderful support system. I have made some nice friends on here that I am now friends with on facebook where we can share more of our experiences.
Becky, I am sorry I have not been able to be there for you. I did find this article very helpful.
http://www.a-good-dying.com/physical-stages-of-dying.html
however, when it came down to it, my mom did not pass like this. It was completely unexpected.
Know that I have been thinking of you all day. Today has been the first day I have actually had to myself to just be and grieve…but you have been on my mind all day. I don’t want anyone to have this pit in their stomach.
hugs to you,
MichelleLainy, thanks for your advice. I’m right there with Adam…this really sucks. My dad is so lost right now. I’m a basket case, so I’m not real helpful. But I keep him out and about, since there is lots to do right now. I’m exhausted. It’s only 8 here, and I’m ready for bed.
We spent lots of time looking through photos. I wanted to put some on the tables at the reception with the flowers. I thought that helped me quite a bit. I looked at all the pictures of my mom and said, “She really had a great life, perhaps too short, but she sure had fun.” Then I realized I had 40 good years with my mom. A lot more than other people get the chance to have. Then today my dad and I went out, I saw women my moms age with their mothers and I couldn’t take that.
Adam…I am sending you good thoughts for your and your children. I am so sorry you are having to go through this. She was much too young.
Thank you all for your support here on this site…it means so much to me. I always took the good news from here and brought it too my mom. That was part of what kept her so hopeful. So many success stories. But not enough. Too many people have passed this week from this awful disease, and those are just what we know about. There are not even 2,000 on these blogs.
I have to say, I never expected my mom to go the way she did. Never expected her to have cancer, much less a rare one. Even on the day she died, I never expected it. I just took her shopping on Thursday. She was only able to shop for a half hour in a wheel chair, but she was determined to get new clothes (her hernia was getting too big). She even insisted that I drive an extra 30 minutes out of the way to make sure she picked up a birthday present for my husband.
What I expected was for her to slowly get more tired and eventually just be in a sleep state and pass that way…isn’t that what happens??? After our eventful afternoon on monday when we almost lost her trying to move her to her bed, the 10 feet in the wheel chair was just too much for her, she passed out and started shallow breathing. Even the nurse who was there at the time said she was passing. However, I was not going to let my mom pass in a wheelchair…it just looked way too uncomfortable. When we got her on the bed, she slowly came back.
Right before she passed she had me on one side of her and my dad on the otherside of her. She didn’t have any energy all day. but someone she got up enough energy to slightly lift and turn her head to tell us “Shhh”, then she laid her head back down. My dad and I were looking at each other because neither of us were saying anything. My husband and daughter were in the other room, but they were sleeping. Then she did it again. She then asked my dad to lift her up and she said she couldn’t breathe. I woke my husband and daughter and we were all able to be with her.
I still can’t believe it…I keep waiting to hear her tell us, “I’m not sleeping, I never sleep. I’m only resting my eyes.” Thats what she would say to use (usually yell it from another room) if we went to check on her and reported back to each other.
The day after my moms death, my daughter and I were driving home from my parents. We both saw something. My 15 year old daughter asked in a scared voice, “Mom, did you see that? What was it?” I started to cry uncontrollably, which scared her since I was driving. After I calmed down I told her, “That was a shooting star hun. That was grandma telling us she is okay.” I’m not sure where you all live, but here in Los Angeles, you never see one. I have perhaps seen 2 in my 40+ years here.
I hope that was a sign from her and I will continue to believe it was. I can’t believe I don;t have a mom anymore. Making these plans were so tough. I always go to my mom for advice. I don’t know who I am going to check on everyday.
Thank you all for listening.
I am so sorry to hear this news. Thinking of you and your family this morning. Hugs and prayers to all of you. I am glad that Petra was able to celebrate with you.
Hi Sunny68, my mom also has kaiser. So I have dealt a lot over the last year with Kaiser. Even though everything that could could wrong, did go wrong, I still feel they did as much as they could. My mom went in for sgallbladder pain over 2 years ago…and 2 years ago the doctor (different doctor than my mom’s regular doctor) told her she just needs to eat better and the pain will go away. A year later after the pain persisted, she went back again and her doctor said you tell them you want your gallbladder out. Then when they went to take out her gallbladder there was a tumor attached from the gallbladder to the liver…and here we are now, a year later. The only difference in our cases in my mom was 62 at diagnosis.
Kaiser is unfamiliar with this type of cancer, however, we did do our second opinions at USC Norris where they do have specialists in CC. We would go there to make sure that the Kaiser doctors were on the right track. And they were. Dr. Lenz did advice to change treatments around a little bit. For example, break the chemo up with radiation, so my mom wasn’t doing too much chemo at one time. And Kaiser was more than happy to take the suggestions.
It was not difficult at all to get my moms medical records. We may have had to go to 2 different places. You fill out a form and give them $10-$15 and they will either print it up for you or give the information to you on a disk. However, it does take about 7 days to get it. But again, it takes a while to get in for an appointment. USC was great about getting my mom in ASAP. At first they wanted to wait, but whenever we needed they got us in within a week. I am sure UCSF will do the same. Our second opinions usually cost anywhere from $300-$500, depending if they charged us a facility fee. We tried to get Kaiser to pay for it, but they wouldn’t. However, they are suppose to send you somewhere else if they are unable to treat you. City of Hope wanted $1500 for an initial visit.
As for why your mom will not swallow, I can not give you any advice on that. My mom hasn’t had that problem. She doesn’t like to eat. I am passing on this link that I found after my moms last couple of doctors appointments. Both doctors (primary and second opinion) gave my mom only a couple of months…another week and she will have outlived their timeline!! But I found this interesting. I don’t like to look at it too much, because sometimes it puts me in the wrong frame of mind. Meaning it doesn’t put me in the fight mode. But here is the link:
http://www.a-good-dying.com/physical-stages-of-dying.htmlI found it interesting as there were journal entries to go along with it. I guess I was looking at it because I didn’t know what to do about work and who would take care of my mom. Friends told me to go ahead and take as much time off as I can right now. I am currently taking off 2 days a week to care for her and my dad is takes the other 3 work days off of work. She is doing great. She needs to have her belly drained again, that puts her in some pain, but I was able to take her out last monday for a manicure and pedicure.
Please don’t let them persuade you into not having a second opinion. At least you will know you have done all you can. My moms second opinion doctor perscribed a medicine to help prolong my moms life, and her primary doctor was going to try a harsher chemo (knowing that it will not work), but my mom decided to go with quality of life…she is just waiting for the quality to set it.
Do be discouraged about getting your moms paper work together. It is a little task with trying to get them when you want them, but it really isn’t too difficult. Kaiser has everything right there.
Please keep us updates and I’m wishing you all the best.
My mother’s doctors say that CC is not hereditary…I don’t believe them quite yet. My mom’s aunt died 3 Thanksgivings ago from CC that affected the bile duct. My mother is currently battling CC that started in her gallbladder and spread to the liver. Therefore, I think there is more of a link to hereditary than they think…but not enough information.
hebrown696, you are such a sweet daughter. I am so sorry for your loss. I couldn’t imagine losing a parent at your young age. I was 23 losing my dad and it was tough then. You writing your thoughts down is a good start to helping you feel better. I’m glad you did, this way we can all honor your dad and also pray for you and your family.
Just remember all the things your dad would want for you…keep doing your best in school and make good choices. You know he only wants the best for you and for you and your brother to be happy.
We will all be thinking good thoughts for you and your family. Keep us posted if you ever need to talk. I have a 15 year old daughter and I know how important it is for you guys to be able to talk…please don’t hold your feelings in. Hugs to you and your family.
Adam…what a wonderful update. I hope your wife enjoyed her shopping trip. I am pretty much in the same place as you with my mother right now. I’m sure what you are going through is 1,000 times more difficult. I can’t imagine. I’m am glad she is in good hands. Thanks for the positive posts. I hope my mom will be able to enjoy some days like that. She keeps waiting to feel better. The nurses finally told her that this is the best she will probably feel. At least she has perked up these last couple of days. Last week had me really worried.
I’m sorry for your and your families loss Debbie. This disease really stinks. I am glad you got those 3 years together and were able to do some fun things. That is all my mom hopes for, is one day to feel good enough to do something.
I’m glad you posted. I have received a tremendous amount of support on this site. As much as I hate this cancer, I see the name and logo, and I feel the support from this group.
Take care of yourself.
Joe, I am sorry. My mom too was diagnosed at 62. We have always done our second opinions with Dr. Lenz at USC. Also, UCSF and Stanford are really good. I was thinking of going up there. However, a friend of mine, whose mother is treated at Stanford, said that if we were being seen by USC we were in the best hands. Dr. Lenz’s staff always did whatever they could to get me mom in quickly.
I know money is not an issue when it comes to this. However, my mother put off getting a second opinion for several months. Her insurance would not pay for it. They were in a money crunch with the economy (my mom was a real estate agent). I offered to pay for it, but she wouldn’t let me. Finally, I just made the appointment and paid. USC was about $500. Whereas, city of hope wanted $1500
Best of luck. My heart is going out to you guys right now. Every thing is tough with this disease, but all the unknowns at the beginning are the toughest.
Joe, I am so sorry your family is going through this. My mom was diagnosed exactly one year from tomorrow 10/7…it has been tough on all of us. There are other things they can do. None of my moms doctors were encouraging, but we kept trying. Where are you located…state?
Thanks for your ideas and I am off this morning to get her some pear juice, even though she doesn’t like pears. Norco is just another typeof vicodin. I will ask her palliative team about morphine. My mom did not want to go into hospice because of the connotation. However, palliative is just the same except you are able to do treatments, such as chemo, while on it.
My moms current pill regimen include a little pink and white over the counter pill for her stomach, Norco every 4 hours, 4 colace, 2 senna, and gas tablets as needed. I will ask her team about morphine. My only hesitation with morphine is that she will think it is near the end if she is on it. Also, she was a bear to deal with in the hospital when she was on morphine…she was not fun.
