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Lainy – I am so glad that Susan Levine listened to you. I am even more glad that she will see at the memorial service what amazing people you and Teddy are. Maybe that will move her more to make sure that in hospice people are kept comfortable and cared for with the same love they would want for their own family. I think this could be a great opportunity, plus maybe there will be an opportunity for her to learn more about cc and possibly use her influence to spread the word. I miss you, my friend. Blessings, Susan
Thoughts and prayers are with you and your family. God is always faithful and when the waters are swirling around me and I think they want to swallow me up, I turn to Him, my refuge and my strength. Glad you have that support also. Blessings, Susan
My 2 year old granddaughter tells me to sit while she checks on her Papa. She kisses him and covers him with his blanket and tells me he is ok. When he leaves the bedroom, which is rare, she announces to everyone, “That’s my Papa.” She doesn’t understand what is going on, but she is very much a part of it. Blessings, Susan
Welcome to the board. This is a great place to get information and support. Gavin always says that we are sorry you had to find us but glad you are here and I echo his sentiment. My husband was/is not a surgical candidate so I cannot help on that front. We are here for you so post frequently. Blessings, Susan
No greater blessing than a baby – Congratulations! As always embrace the good and hold tight during the bad. Blessings, Susan
I also appreciate the discussion of slow growing vs. fast growing. My husband has a very fast growing tumor. He was diagnosed in August 2010, but in August 2009 he had a CT scan (without contrast) that did not show anything. In August 2010, one year later, he had tumors in the bottom half of his liver measuring 12.4 cm by 12.4 cm and in the upper lobe “innumerable tumors” measuring a conglomerate of 11.4 cm by 11.4 cm. He is not a surgical candidate. He has failed considering each month and this past week has hardly been out of bed at all and is using a cane even to walk to the kitchen. We are praying that he will bounce back and have some good days again, but we really don’t know. It has helped to understand fast growing vs. slow as I didn’t understand why some people lived over 5 years after diagnosis and we will be lucky to get 6 or 7 months. Blessings, Susan
We have a 5 1/2 year old grandson. He had a grandma die in October 2009 and we have been helping him grieve this loss by making memory books, coloring pictures of things they did together and talking about how much she loved him. It was a sad day when Papa had to tell him that he was going to live in Heaven with God some day soon. Our grandson turned to me and said, “Nana, I guess we have to make another memory book.” I cried but I was glad that we had been teaching him that grieving is ok and loss is a part of life – a lesson we wished he didn’t have to learn so young. Since she is so close to her grandpa she will know that he doesn’t feel well. I agree with Lainy that if she is part of the game plan early on, it will be better for her. Of course, keep information appropriate to her age level – grandpa isn’t well and the doctors are trying to help him. Our thoughts and prayers are with you and your family. Blessings, Susan
The swelling is common in some people. You will see and hear the word ascites – the fluid buildup. It may be seen in the feet, legs, abdomen, etc. My husband has a diuretic to help relieve some of the water buildup. Good luck with that. Blessings, Susan
My husband felt good on chemo. He had the Gemzar/cisplatin and did not suffer weakness, nausea, hair loss. Don’t wait for the other shoe to drop – it will, over and over. Celebrate every good day and hold tight on the hard days. Blessings, Susan
LD – I relate completely to the total change of personality and the children (even if they are adults) wanting to know where their dad is. My husband is so easily confused and I didn’t know that it could be the toxins. I want to ask the doctor about that tomorrow, but my husband gets upset if I bring up things he is no longer good at. He doesn’t see it as trying to help. Bless him and bless you. Thank you for sharing these thoughts. Susan
Terry – The loss is immeasurable! One day you have a soul mate who celebrates your achievements and helps shoulder your burdens. Then a thief (cc) comes along and robs all the wealth you had in that relationship and leaves you emotionally lost (for a time). Keep missing Wayne and your mom and know that they are watching over you from above. Sometimes I talk to my dad’s picture ‘cuz I miss him. I face losing my husband soon and can’t imagine what life will be like – we’ve loved each other since 1969. God be with you, Susan
How fun to read about your family and your mom and dad. I really enjoy the Fred and Ethel comment. While my husband and I are true soulmates, we are not the Sound of Music kind. We are the speak your mind kind. Thanks for sharing. Blessings, Susan
We have found memory loss to be a big problem and I get concerned about Randy and finances. He seems to have trouble keeping track of his bank account, bills, and other financial business. I have been worried about his brain due to his major change in mental attitude and outlook. I realize a lot of it is fear, worry, anxiety, etc., but he personality is not the man we have known and loved. Please let us know what the doctor says about your mom. Blessings, Susan
Just a quick note – we have received notice from City of Hope and Loma Linda that Randy is not a surgical candidate. We knew that, but felt for his mom’s piece of mind we had to check. We will now wait for information from City of Hope and Loma Linda from their oncology departments. If his tummy is swollen tomorrow, we’ll go to the doctor by Friday. Thanks for the comments. Blessings, Susan
