willow

Kelly,
Your Mom is a caring, incredibly strong and loving woman. She has contributed so much to this board by offering support, advice and encouragement. Also by sharing her own story. Many thoughts are with you at this precious yet painful time.
Willow

Caroline,
My heart goes out to you as you prepare for your beloved mothers passing. Your mom sounds like she has more grace than many of us put together! I am so glad you posted and shared your thoughts on this tender yet heart wrenching time. Helping someone pass as comfortably as possible, helping them feel loved and helping reduce anxiety is a huge yet honorable responsibility.
This is on my mind every day now as my sister gets closer to the final months of CC. Like with my Dad last year, I will be very involved in this journey. It was so hard, but just yesterday, we went over her end of life wishes including the ‘POLST ‘ (a newer very detailed version of an advance healthcare directive and it stands for “Physicians’ Orders for Life Sustaining Treatment”). It is always printed on hot pink paper. There was other paperwork too about non medical final wishes on how she would like her final days to go (as detailed as asking if she wants music, massage, hand held, religious preferences, cremation vs burial etc). We also discussed differences between hospice at home and hospice facility but we are not ready for hospice and she is still fighting. I feel relieved that my sister has filled all this out and we talked about it even though her passing may be a long way off. As I was leaving her home, I got a text from my other sister that her sis in law was passing and only a block away at a local hospital. I decided to go to support my bro in law and his grieving family. While heart wrenching, it seems like it is getting easier to accept the universal nature of this monumental event. I am learning to set aside fear, try to anticipate needs and simply be present. The family brought an Indian priest to sing and play the drum. Though I am Christian, I found it very comforting and it helped everyone in the room to channel their prayers toward a peaceful passing. She passed this morning peacefully.
You are a loving daughter. God Bless,
Willow

David and Lisa,
Thank you for this update! I have been concerned and it is not like Lisa to be out of touch so long. So sorry to hear her recovery has been so painful. Thank goodness it is subsiding enough for her to be able to walk around more.
Lisa, sending you love and blessings,
Willow

Hello David,

I too am so glad you posted. You can truly help others by sharing your story and suggestions. Wish you had known about the forum sooner too. What is l
LCSW? I am so sorry you lost your father at such a tender age and didn’t get the right help till you were much older.
Your story touches me especially because my sister’s only child, a son, just turned 10 in Jan and doesn’t really know how serious my sisters cancer is (it is advanced). I lose sleep and shed a lot of tears anticipating his loss and the years ahead when he still needs a mothers love and guidance. Luckily, he has a good Dad but I am concerned that he won’t get the professional psychological help he will need and that instead, his father may just choose the “don’t talk about it so we won’t be sad” route. I really don’t know. In the past, his Dad has resisted counseling for my nephew when he had emotional problems at school. I too tend to stuff emotions/loss/tragedy away and hope it disappear forever behind pride, work, exercise, entertainment, distraction etc..
Anyway, it breaks my heart to think that my sister may not be here months from now and I want to be the best aunt I possibly can to support my nephew now and in the years to come. If you have suggestions or ideas, or signs to watch for that may indicate his mental health is not in a good place, please share.
On a different subject, Your have an interesting education! Happens to be what my father studied… He had a masters in linguistics and taught linguistics and Spanish. He studied the native language of Peru (Quechua) on a Fulbright scholarship back during the Cold War so our family lived in Peru for a few years. The job market is tough for young college grads these days.. Really happy to hear you have a new job. Is it the clothing company, the dental tool company or another one with the same name (American Eagle)?
All the best to you and thank you again for offering insight into life as a surviving child who lost a parent to this awful cc.
Willow

That is FABULOUS! Congrats Susie, and thank you for sharing this milestone!
Willow

Peace be with you and your dear husband at this difficult yet precious time.
Willow

Sometimes they will look at your records (but not at you physically) and give a brief opinion for free or for next to nothing. Since it’s out of network, you still may get 50% covered after your deductible is met so it’s worth calling your kaiser benefits office to ask.
Lazarex and Lance Armstrong foundation as well as many others can help reimburse for travel there (gas, parking and maybe hotel). I am sorry I can’t think of others. Ask social worker at USC and Kaiser.
Willow

Hello and Welcome, Wil,
How ironic indeed that you are a cc survivor and in the field of medical physics! I have a feeling we can learn as much or more from you as you can from us about early diagnosis. This is a critical area of research as it is the best chance for survival until they develop better therapies for more advanced cc.
So glad to hear you had surgery and are doing well. Please post links to interesting findings on early diagnosis you come up with. Meanwhile, perhaps contact board members from The cc Foundation to find out more about who is doing work on early diagnosis as they know many leading researchers in the field.
Salud!
Willow