willow

Linda,
You and your dear husband are in my thoughts. May he continue to find comfort in your loving hands.
Willow

Judi,
This is an awful development for your husband. I’m glad they did the bypass quickly. GI stomach bypass has been a topic of discussion recently and is one of Marion’s special concerns. It’s a big deal but many have recovered well and a member named LisaS can probably give you tips as she just had a similar surgery a couple months ago.
How nice that your husband had 2.5 years of good, worry free living. Perhaps his mindset (thinking he was permanently cancer free) helped him to live fully and feel less stress. We all know that this is a tricky cancer, even when there is no evidence of disease on a scan, but we also all have different coping means. Are you still in Carson City, NV? Where was bypass done? (Reno?). I’m in N. CA. Best to you and so sorry you’re thrown back into this awful situation. Take care.
Willow

That poem is lovely, Lainey.
Gerardo, it is fitting to commemorate Gingers one year anniversary from the day she left to heaven. It’s wonderful to remember her as well as help others by participating in the Relay For Life event. We’ve done that one many times and it is a very uplifting experience. Best to you as you continue your healing journey.
Willow

Yes, Gavin, this is relevant. Traveling is exhausting and expensive. Distance has limited my sister to care in her local area. Thankfully its a good place but not top rated for CC. Even locally, it takes the better part if a day to get there, do appts and get home… Child care and her husbands work arrangements have to be made etc. We “do what we have to do” but realistically, most must find care fairly close to where they live or move temporarily to the city to get it.

Michelle,
This is probably the hardest thing you and your kids have ever gone through. Be kind to yourself and each other. When children are involved in the day to day process of watching their father decline, it breaks my heart, though I’ve heard that kids are amazingly resilient. Still, I hope that hospice social worker and the school are giving extra special counseling to them now and in the future. I also hope that the teacher/principal is aware of the water bottle incident and will address it with that thoughtless kid. You have enough in your plate but I’m hoping the school doesn’t let that kind of thing go.
Your energy should be in loving and comforting your husband and kids. While I agree with Lainey that visit time should be limited, it would be cruel to altogether keep your husband’s parents away from him. His mom will figure out for herself that he is not able to stay awake long and simply needs quiet company. She may have loving things to say to him even if he can’t respond. The way you describe his condition makes me believe he is closer to passing than what hospice told you. All the signs are there, including withdrawing into himself, fidgeting, confusion, not eating/drinking. I do believe animals sense when someone is passing. The way your dog is behaving makes it seem like a spirit is there though I have always been a skeptic about ghosts but honestly can’t rule out the possibility. Last year I was in the hour by hour intense time of caring for my elderly Dad while he was passing. Hospice gave us vague timeline too, but it happened fast (within a week of signing him up for hospice). My siblings didn’t have time to get there. At my Dads assisted living, each resident has their own little apt. When Dad was within a day or two of passing, the resident cat started coming into his room. Never had before! We would often see the cat in the common/dining room and it always hung at night with another resident at opposite end of hall so I thought it was so strange that it was coming into Dads room. Being a scientist type, I kind of attribute this to maybe something that the cat could smell that Dad was giving off, like ammonia or other gas in Dads breath. Not really the same as how your dog reacting but I agree animal can sense things we can’t. Would like to think that a departed loved one or an angel is there comforting your husband.
My sister is the one with CC and though she is stable generally, her CC is not. She has a 10 year old son who will have to go through what your children are and that is the most painful anticipatory grief for all of us, including my sister. When it comes down to it, we need to love each other and have as much patience as possible with each other. That and stay on top of hospice with all your husbands symptoms so there aren’t delays in keeping him comfortable.
God Bless and comfort you,
Willow

Linda,
This is a difficult situation and I’m sure you are just putting one step in front if the other to get through it. I can’t help with medical advice but do know that when fluid drains too fast from ascites it can cause low BP and other issues. Sounds like comfort and his safety (from falling) are the biggest concerns at this stage. When my father was passing last year from a Alzheimers he kept pulling out his urinary catheter over and over, causing himself pain and trauma. They surgically placed a suprapubic catheter through his lower abdomen as an alternative but he eventually pulled that out too. Once hospice was on board, it took a few days to get meds dialed in so that he was not agitated. Simply ask if you don’t feel he is getting all he needs and on schedule.
May God Bless you with strength and surround you with love,
Willow

Stable is great news!
I’m repeating what others said about Intrahepatic CC. Not unusual to have no jaundice/duct blockage/itching with ICC. My sisters only symptom was temporary sharp pains in upper rt abdomen at night if she slept on the “wrong side”. It’s been 18 months since diagnosis and she has kept her weight up, has a good appetite and still only has intermittent very short lived pain but does have some fatigue (more when she was on day 3 after chemo). Unfortunately, the CC has advanced and she is finally ready for a 2nd opinion. Good that you’re doing it soon. Knowledge and expert ideas are always welcomed with this cancer but I’ve read over and over that you should seek the opinions from the places that see the majority of cases of this rare cancer. Sometimes you can just send records and scans and get “remote” opinion before traveling.
Sincerely,
Willow