jmoneypenny
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Dear Joyce,
I am so so sorry for your loss. How bravely your husband fought! He and the others on this site (like Jeff) who have kept this cancer at bay for longer than would ever be expected are an inspiration to all of us. He will not have died in vain as he is a sign that more and more people can hold off the cancer for longer times until there is finally a cure. I know nothing can comfort you right now, but you and your family are in our hearts and we grieve with you.
– Joyce MHello,
I’m just recently transplanted from Manhattan to New Jersey and my mother was in Staten Island and she was treated at NYU Medical Center. They’re up-to-date on this disease and pretty knowledgeable but I didn’t like the top oncologist and they made her wait for hours for each appointment. I was looking into Memorial Sloan-Kettering, which everyone says is the absolute BEST for most cancers, but it was too late. I would recommend Sloan Kettering – do it as fast as you can.Best of luck to you,
Joyce
Hi Pam,
I can appreciate all your concerns and all you’re going through. I was going to suggest anti-depressants when I read your post, then got to the part about the docs not wanting to stress the liver, and that makes sense. I had anti-depressants prescribed for my mother but she was in hospice care by then, so there was no hope and they weren’t worried about further liver damage. And she died a few days later, anyway. But your situation is vastly different – there’s still a chance of a cure or at least a remission in your husband’s case, so I guess it’s better to be cautious about medication.
So I guess I’m not very helpful so far, but I understand what you’re feeling because my mother was very depressed at the end of her life. Totally understandable to be depressed when you’ve been handed a death sentence, and I resented people that gave me examples of optimistic souls who were cheerful to the end. Everyone deals with things differently and it’s great to have a wonderful attitude, but not everyone can be that way. And though your husband wasn’t told there was NO HOPE, like my mother was, he may be thinking that there is no hope. I’m sure, as you said, the fatigue and weakened immune system and constant battling from the chemo greatly contribute to his low spirits. Any medication can disrupt your mental balance and make you more prone to depression or anger – as I’ve learned from taking Tylenol Sinus medicine, which used to make me and my husband so angry that we called it “the Mean Pill.”
Being made to feel like you’re just a case number and not a human being anymore contributed to my mother’s depression, too, which is why I broke her out of the hospital and got her home so she could be surrounded by loving family and friends. It sounds like your husband is at home, but if he’s spent a lot of time in hospitals, it can be torture for the soul, I believe. Also, if he’s had a previous history of depression – or anxiety attacks, as my mother had – he’s probably predisposed to feeling blue or anxious when circumstances are so terrible and frightening. Maybe there are herbal supplements like St. John’s Wort that wouldn’t be so hard on his liver? I know there must be others out there, too, that you could ask doctors about. Also, you may want to look into acupuncture – it worked wonders for my mother’s nausea during chemo, and my sister swears it cured her of all of her ills.
My last suggestion, for what it’s worth, is that maybe meditation, yoga, or some kind of inspirational reading – on book or to listen to on CD – would help. My mother was briefly energized by listening to Deepak Chopra.
Sorry I can’t be of more help – hopefully the chemo is the culprit and there will be an end in sight to the chemo so he will return to his chipper self.
Great luck and love going your way,
JoycePranjal, I am so sorry for your loss and I know the pain you must be feeling. My mother died 2 months after diagnosis also. And I also had a lot of questions. Please don’t feel guilty or like you could have done something more – you did all you could do for her, and this disease is horrible and fast-moving sometimes. By the time tumors grow large enough to cause symptoms, most people are too advanced for treatment. IT’s a deadly and silent disease at first, and I do believe my mother didn’t have any tumors until maybe a year before her diagnosis, but it didn’t show up on blood tests until she had hundreds of tumors on her liver and was near the end. There is just no way to detect this cancer most times.
As for your question about stenting, I believe you did the right thing to allow the stent – it helped the jaundice, but it was too late to do more. For some people, stents allow them to live for a year or maybe many more years, but it all depends on where the tumors are and how aggressive the disease is. The stent didn’t kill your mother – the horrible cancer did. You did nothing wrong – everyone on this board has experience with stents and there are usually no problems. My mother was vomiting and uncomfortable at the end, and that was just the way this disease progresses when it’s very advanced.
It must feel terrible to lose your mother at such a young age and so suddenly – my deepest sympathies are with you. I know you were there for your mother and she knew that you loved her and that’s the best thing you could have done for her.
– JoyceA friend of mine lost her father last Father’s Day – he was 55 and he had adenocarcinoma of unknown primary but the liver area was definitely pinpointed and I now believe he may have had cc. He was a Vietnam vet and had been treated for skin conditions related to Agent Orange years ago. I think there’s definitely a correlation, but don’t want to push her about investigating it. I think you’re really on to something here, and the VA should acknowledge those who have this kind of cancer. Let us know if you find out anything.
– JoyceAll my heartfelt sympathy goes out to you. I know words can’t express how much this loss means to you.
Peace,
JoyceHello Amilcar,
I don’t really have an answer but my father, who died of brain cancer a week after my mother died, had high glucose at the end because of steroid-induced diabetes. He was never a diabetic but his sugar went sky high because of the steroids they gave him – sorry, I don’t know which ones they gave him, so I’m not much help. But if your father is receiving any steroids, either with his chemo or separately, I would look into it.The anemia is definitely from the chemo – my mother had to be hospitalized because the anemia became so bad that she felt too weak to stand and very short of breath. Procrit injections help, but they take a while to take effect, so she had some blood transfused and that helped a lot.
Best of luck to you and your family
– Joyce
Seasheller,
I just wanted to address your question about jaundice, as my mother didn’t have jaundice either and it made me very confused after all the research I had done. I think the fact that her cancer was intra-hepatic (within the liver) rather than extrahepatic (the bile ducts outside the liver) had something to do with it. She never had any blockage or drains because the ducts outside the liver were the last ones to be affected. I hope this helps somewhat, and all my best wishes go to you.To Joyce from another Joyce,
I am so sorry and I wish your husband relief of his symptoms and some comfort and peace. The same to you and your family, also. He has fought a valiant battle, as you said. Hopefully you will have some wonderful last moments together and know that you did everything possible to beat this horrible illness.Much love going your way,
Joyce
Hello seasheller,
Thanks for your kind thoughts. As for your question, I think it’s really hard to find any common denominator between those people who beat this cancer for a long time and those who succumb quickly, which makes it very frustrating. I believe the fact that my mother had autoimmune hepatitis and a quirky immune system in general contributed to her early death. Also, I believe the chemo weakened her and she should never have had it – but that’s in hindsight. She had no symptoms except fatigue when she was diagnosed in November, so we wanted to put off chemo, as her quality of life was still good (sounds like your husband’s situation). Sometimes people can go on like that, symptom-free, for a while, but sometimes the cancer gets more aggressive. When she started getting very bad nausea every day we opted for chemo because they said it would alleviate her symptoms. Well, they were wrong! It really weakened her and gave her an infection. Any cancer, but especially this one, can go from dormant to aggressive and I can’t figure out why. I have a theory that intrahepatic is usually faster-growing and debilitating, but I got my doctor’s degree from this site, so don’t take me seriously!Oh Carolann, this is such a sad time for so many people lately – I am so sorry for your loss. It’s so hard to bear, sometimes I think I’m selfish because I should just be grateful that I had such a wonderful mom and there are some who never had that love, and that makes me feel just a little little bit better, to think how lucky I have been. And it sounds like you were very lucky too, to have such a wonderful and positive influence in your life. We’ll try to hang on to that and remember them as they deserve to be remembered – and maybe one day they’ll find a way to beat this horrible cancer so that caring and loving people like your mother won’t have to be taken from us too soon.
Peace
JoyceOh, you made me tear up when you spoke about the slideshow – we had one of those for my mother, and she also looked great on Christmas. We had some wonderful shots of her in a bathing suit looking like a real movie star when she was younger – always looked so young and alive, people thought she was my sister. And we picked so much music that she loved, we found it hard to narrow it down because she was always singing and dancing – and I realized after the funeral that I had forgotten to include her all-time FAVORITE song, which was Harrison’s “Here Comes the Sun.” How wonderful that you played that for your sister – now I feel better about forgetting it for my mother.
My sister has been annoying me greatly since my mother’s death since she grieves differently and basically acts like nothing happened – just fills her schedule and stays busy and talks about how wonderful it is that we got some money from my mother’s death. I realize everyone grieves differently and I have to put aside my resentment because everyone in our lives is a treasure and your story of your sister makes me see that my sister could be taken from me tomorrow and she’s the only family I have left – except for my 89 year old grandmother. Thank you for bringing some perspective – I will hug my sister tight and let her know how much I love her (even though she drives me crazy!!)
Be well!
– Joyce
Oh Kate, Kate, Kate, I’m so so sorry! I feel like I knew your mother, she lived such a wonderful life, and I just lOVE that clip of her in Greece! Especially since I’m such a big animal lover! I, too, went through some recent video clips on my mother’s birthday in February – we had a big party without her and watched her playing with my daughter, dancing, being her goofy self. We laughed and cried and felt like she was there with us. It’s so wonderful to have those videos now, we never realized at the time how important they would be. What a great woman and mother, I’m so sorry that she had to suffer AT ALL.
It’s not going to get better for a while – at least, it hasn’t for me – but those memories and videos that make you laugh are precious medicine to help the pain. What a beautiful memorial to her. I hope you and your family are holding up as well as you can. Much love and hugs to you and yours.
– Joyce
