My mothers story-now what?
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Dear Bondodd,
I am sorry to hear what your mum is going through right now. This is such a tough time for you all and I can so relate to it all having been there myself with my dad. As both Marion and Lainy have said to you, this is such a precious time right now for you all. Please know as well that all of us are here for you and I am thinking of you and your mum right now.
Hugs,
Gavin
Dear Bondod, this is a time for talking about love and loving hard. It can also be an awesome time as I witnessed. I am glad you have Hospice coming in and you might ask them for their bookelt they have as it gives you a good guide line of what to expect. Just a little suggestion, when Mom seems dehydrated try a few very tiny ice chips just to keep her lips and mouth moist. Also at the Drug Store you can get a package of foam like pads on a stick and when moistened you can blot her lips as well. I would also ask Hospice for a walker so that Mom can steady herself when walking. Best of wishes and prayers coming your way.
bondod…the dark vomit – does it resemble coffee grounds? This so very painful time is also one of the most precious of times.
My heart is with you,
Hugs,
MarionIt has been a week since I last wrote and thank you all for your words and concerns… the Dr has done all he can do, we have started hospice for mom. We had a scan done of her bladder and intestines and they are clear. No obstructions. So it looks like the cancer spreading …She started going down quick last week and I just had a hard time accepting it.
She was in alot of pain, but we finally have that under control. She spent a full day yesterday of vomiting and since she has not eaten for days and has not been drinking, she was vomiting up bile and then black. As far as I know she has not gone to the bathroom, either one for a week… Her stomach has gotten bigger, is twice the size in just one day…. and she says she feels bloated.
Today is a different story….. I can tell she is dehydrated, by her mouth, but she seems alert and even has gotten out of bed a few times to visit although she is extremely unsteady… I don’t understand….She was even drinking some water today.. This is such a roller coaster ride. And I don’t like it…. could she be starting to get better or is it the calm before the storm? Hospice says we do not know, we leave this earth as we come into it, not knowing the time or day. Thank you all….Bondood…….don’t hesitate from taking her to the hospital. They then have to control the pain and provide you with the answers.
Hugs
MarionHi,
Just upfront and let you know I am not a doctor:i am just a hospital worker.First and foremost, bring your mom to see a liver specialist (Hepatologist) now and check out the most appropriate treatment to start first (ie: to treat the accumulate interstitial fluid first or the liver tumor first or at the same time;) Get a 2nd opinion by a GI specialist to see whether the urinary problem is related to the fluid accumulation because of the liver failure or the function of the kidney due to irreversible damage caused by the platin group of chemo agents.
I do not think this is a good time to restart chemotherapy and a 2nd opinion on medical oncologist other than the one you are seeing now and who is familiar with this rare cancer from a large institution along with radiation oncology consult are basic steps to help your mom back to as normal as she can.
God bless.Watch for infection is also a must for your mom since she may be too weak to have another septic encounter with infection.(that means everybody have to be clean and wash hands with soap for at least 15seconds each time before and after taking care of your mom. Fatigue is ok as long as she can relax and has bed rest; if it come to be unbearable,and the Hemoglobulin is <8, blood transfusion may be a good way to to relieve the problem temporary; And be sure to rotate her side to side every 2-3 hours or so to prevent DVT (blood clot formation in the legs or other parts of the body);help her moving around in the house every couple hours also helps.
But most important of all now is getting all those 2nd opinions that are mentioned above. I try to find out where your are so I can recommend some places for you but I do not know where Sequim is located.
God bless.Bondodd, a lot of your story sounds sadly familiar. My mother just went through all this and it won. Taking Gem/Cis is highly toxic for the kidneys. Keep an eye on kidney function, water retention, and urine output. Taking those chemo drugs, I would worry more about the kidneys than the tumor. Everyone handles chemo differently but in our case, kidney failure from chemo was the overwhelming problem that could not be overcome.
Good luck. Questions, just ask.Bondodd, welcome to our extraordinary family but sorry you had to find us. Just one thing comes to my mind…2nd opinion! For so much to be going so bad so quickly just doesn’t sound right to me. Not sure where her CC is located but my husband had a tumor that bent his right ureter and he had trouble urinating. They stented the ureter and he was fine after that. If she is in pain and vomiting they can give her rectal pain meds! The most important thing is to get her comfortable. Mom also needs to be at a Major Cancer Center and with an ONC experienced with CC. In the meantime she needs to be made comfortable and it is easy to find out if the fluid is from the CC. If in fact she has stomach fluid built up it can be drained. Either way a 2nd opinion is certainly in order here. Best wishes and you are not alone, we are all here for you.
My mother in law was diagnosed on her birthday in 2010. She is 68. Started with pain in her liver area with fatigue. When we were told it was Billiary Tract cancer we were told she would die from this and had maybe 9 months or less. No surgery possible. We all said we would fight this and she started chemo in February- gem/cispla. Over the course of 6 months she encountered nausea and weakness from chemo, but tumor was shrinking. She started to lose feeling in her feet and fingers, and became extremely weak and fatigued from the cisplatin. Decided to discontinue it and just go with gemsar. Tumor continued to shrink and by February of 2011 tumor had shrunk half the size and had stabilized. No chemo now for 2 months. Her blood work always was pretty good except for the low blood count and she would receive a nuprigen shot. She took a vacation for 3 weeks, a road trip, feeling pretty good. She did good on the trip, just came back exhausted, tired. A couple days after her return from the road trip she got shingles, near her eye. She had that treated…. Then came the cat scan to check on the tumor. It showed it was growing again. Back on gemsar. 2 days after treatment she developed a fever and pain in mid section, we went to emergency. She thought she was going to the hospital to die. Turns out she developed diverticulitis. Antiboitics and hospital stay for 3 days as well as soft food diet. 2 weeks after that she went back in for chemo, and 2 days later, fever again and stomach pains. Had a scan done and 2 areas of diverticulitis as well as tumor doubling in size, and also fluid around liver and some organs. Liquid diet for 2 weeks and antibotics again. She grew very weak, developed thrush.. In bed alot. Had trouble walking, keeping her balance. Had scan again and showed diverticulitis gone, but increase in fluid around organs, etc. and even stomach. She had started eating again, but when she does, she feels extremely bloated. Yesterday we went to Dr and said he didn’t know if the fluid and bloating was from the diverticulits or the tumor. She is in extreme pain, started taking pain meds, but vomited a few hours after taking them yesterday. She is so weak, can hardly walk, she has aged 15 years in 1 month, lost muscle tone. She has trouble urinating, but she drinks plenty of water. Tries to go to the bathroom with not much success. What am I missing here? It seems the Dr. is not doing enough. I go with her to all her Dr appts. have watched over her, basically the caregiver because my father in law in his 80’s can’t hear well. I am at a loss of what to do. My father in law is in denial and just wants her to get more chemo…. Can she snap out of this? Dr was actually thinking of doing chemo if she wanted it. I couldn’t believe that. Any comments or insight would be much appreciated. I am so grateful for this site…..
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