momsdaughter
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Dear Roni,
You are in such a difficult situation. One parent is tough enough, but two is just an impossible roller coaster. I know you have a terrific supportive family which will get you through this.
Keep your happy disposition I see on facebook and know it will all work out, whether we like the results or not. Hospice did not help my Mom much, in fact, they left when she was dying and I had to call them back. But, I hope that was an isolated incidence. People say they are so helpful, just keep vigilant.
You are very special, take care of yourself!
Dear Lainy,
This quote from an unknown person helped me grieve without feeling crazy. It is overwhelming, but after the storm, you will eventually get better:
“It has been said that time heals all wounds. I do not agree. The wounds remain. In time, the mind, protecting its’ sanity, covers them with scar tissue, and the pain lessens, but it is never gone.”
XOXO
Lily’s Daughter, MarthaLovely Lainy,
Please know how much you are loved and appreciated by so many. You will not be alone, WE WILL ALL MISS TEDDY. You have shown us how to be the best caregiver, companion, momma bear there could be. You are such an inspiration.
After my dear mother passed away from CC, I was in such deep pain, I could not muster going online, but I had to follow your story because of your deep love for each other. I will be praying for Teddy, you, and your family.
Blessings,
Mom’s DaughterMelissa,
I lost my beloved Mother on March 5 and I know the devastation you must be feeling. Just know how much she loved you and her family and remember all the good times you all had. I am praying for your family and all of us in this same, insane boat.
XO Mom’s DaughterDuring the past couple of month, my mom had to have a couple of transfusions due to a low red blood count and now she is having shortness of breath. She is not able to do the things she regularly does. She is just so tired. We went to see a cardiologist today and they are going to do an echocardiogram. They decided not to put a port in because they felt she was too weak with the shortness of breath. She has a pick instead.
She is now in her first round of Oxilplatin, Leuvorcin, and 5FU. I know this is standard, but we just have to pray it helps.
She is coming up on her one year anniversary of diagnosis, she had a whipple in March, then began chemo in June. She’s had six months of chemo and they are not planning on stopping unless she decides to. If the chemo shrinks the lymph nodes down and only a few are left they can operate on her. That’s our dream!!!!
We are grateful that she has had this much time with us and it is her strength that keeps us going. This whole disease is maddening…….
Hi Scraggles
How is your mom doing? Haven’t heard from you in a while and I just hope all is well.
Best wishes!
Well we got new CT scan results. Although she is still basically stable, her lymph nodes are increasing minimally in size. Her oncologist, Dr. Lenz, feels that although the gemzar and xeloda have stabalized her lymph nodes for the most part, he is changing her regimen to Oxilplatin/5FU/Leucovorin to be done at home. She is having a port put in next Tuesday and starting treatment. Does anyone know what we should expect? My mom is being brave, but I know that she is terrified.
This has been extremely stressful for my two brothers and two sisters. I have been the primary caregiver and have become protective of her. My sister still has her babysitting her three young daughters at least 3x per week afterschool so she can work! Although it’s great for her to be around her grandchildren, she should not have to care for them. My mom would never say no, she always tries to help everyone. There are many other issues and it’s just sad that this is tearing us apart even more, although we get along, we’ve never been close as a family. That has always bothered my mom so we are trying, but there is too much sarcasm and passive-aggressive behavior. Just sick of it.
Sharon,
You are truly inspiring for the rest of us going through this. You are handling yourself with such grace and love. Your mom must feel so proud of you and feel comforted by your support.
Please know that we are praying for you.
Cinnamin,
Dr. Lenz is my mom’s oncologist and he is really one of the best in the field. Please google him and you will see. My mom had a tumor in her bile duct, not in the liver (which is great!) and Dr. Selby (USC) operated and got it out, but you never know. At this point she has enlarged lymph nodes, cannot do radiation but is on an aggressive chemo treatment plan and has regular CT Scans every 6 weeks. She is 74 years old and that does not matter to Dr. Lenz. Please call his office for a second opinion at least, you will not be sorry. Taline is his assistant and she is EXCELLENT. I feel secure that no matter what happens to my mom, and it probably will, we had the best care possible.
Good luck and God Bless!
Scraggles,
Please know that you are not alone and you can feel free to vent all you want here. So many of us know where you are coming from. My experience is different than yours so I can’t comment on your questions, but I am sure people will start posting soon. I find it helps to come on this site and I hope it will help you too! Take care.
Gavin,
You have helped so many of us with the loving care for your father that you have documented here. I have learned so much from you, yet you always found the time to help others on this website. I truly hope you find comfort in all of your friends here. May your precious father rest in peace.Cinnamon, Unfortuanately if the doctor you are dealing with is not specifically well informed on CC, run, don’t walk to another doctor. There is always hope! Age does not matter. Your father is entitled to copies of all his records and you should keep a set with you and forward a set to your second, and third opinion doctors. They will also give you copies of CT scans, xrays, and pet scans on a disk or copies of originals.
My mom is 74 and is actively being treated. She has extrahepatic bile duct cancer and had a whipple surgery this past March to remove it. They believed they got it all. Her lymph nodes have enlarged and she has no cancer markers, but that can be misleading. There has been no spread to other organs.
After her whipple surgery in March she began chemo treatments at USC in Los Angeles. She is on a thrice daily Xeloda pill for two weeks on and one week off. She also goes in for weekly gemzar chemo treatments- two weeks on and one week off. She also has a cat scan every six weeks to monitor any activity. She has had lymph node shrinkage and also some have grown slightly. For now, she is doing great and we are very grateful for the aggressive treatments of her doctors. They are going to keep her on this chemo plan until it loses its’ effectiveness, but her oncologist has a backup plan. My point is that she is 74 years old and is being treated very aggresively. Please fight for your dad. The insurance originally wanted her to be treated at one of our local hospitals which is a good hospital, but they are not specialists. I had to argue that she needed specialist care and she got it. Just put on your armour and go…
