jmoneypenny

Dear dee and butterfly,
I feel the pain that you speak of – my mother died 8.5 months ago and I still crash into a terrible depression every 22nd of each month, the anniversary of her death. The other days aren’t so great, either. The pain has not diminished and I’m sure it will diminish a bit with time, but right now it’s hard to see the light at the end of the tunnel. We were blessed to have known such wonderful souls, but somehow that makes it so much worse to live in a world without them.
I celebrate your beautiful mothers, and mine too, taken too soon from us and leaving a void that cannot be filled.
Joyce

Dear Lisa,
I can empathize with so much of what you’re going through, not just because we both have a dear parent with this terrible disease (see, I still talk about my mother in the present tense a lot – I just won’t acknowledge that she’s in the past sometimes).

I apologized for being a downer because I know people have different ways of coping and I don’t want to kill anyone’s hope, as we all need that to just keep going one day at a time. But like you, I had problems with my family making me feel guilty when I suggested that we should make plans for the end — my sister was in total denial, and our good family friend, my “adopted” brother, Bobby, got very angry if I suggested my mother wouldn’t bounce right back. I know how alone you must feel – as I felt, because I knew from my mother’s symptoms and blood work that she wouldn’t have much longer, and no one else knew and no one else WANTED to know. So I bore the burden alone and tried to put on a positive face for my mother AND for everyone else. It’s bad enough to watch your loved one die, but to have everyone around you in a fog about it doesn’t help either! I’m sure your resentment towards your siblings is well-justified and will get stronger as the days pass – anger is a great vent of all the bottled-up emotions you’re hiding from the world. But you’re a kind and reasonable person, so I know you won’t be eaten up by hostility and hatred – just normal anger, and I know exactly how you feel. Especially since you’re the one closest to your dad, you feel a sense of possessiveness towards him – not possessiveness in a bad way, but I can’t think of the right word — I felt it with my Mom, like I knew what was best for her and I was most in tune with her since I spent the most time with her, before and during her illness. I think I was right – my sister kept trying to drag her to acupuncture and try out new therapies on her, and my mother was just too tired and sick to do any of that. Even the welll-meaning people who kept urging my mother to “EAT! EAT!” drove us both crazy, as you can’t keep nagging someone who’s nauseous and can’t hold much. I put food in front of her, tried to get her to eat, without being too pushy (I hope), since she got so irritated with everyone telling her to eat. OF course she would LOVE it if she could eat and enjoy it – she tried – and the chemo made everything taste funny, so that made it worse.

Anyway, family can sometimes just complicate everything – I’m glad you have your Mom to be with you to discuss things realistically and go over the options and support you. And your doctor sounds wonderful – even if he’s wrong, at least he has a strong and educated opinion about what to do and what the diagnosis is and he’ll talk to you at length. That’s where it’s absolutely necessary that SOMEONE in the family research the disease – you can talk to doctors and get some answers and understand them. I was treated like an idiot by so many doctors – when my mom got an infection they just told us they were putting her on antibiotics and didn’t say why, so I asked if it was cholangitis, which I’d read about on this board, and they were so shocked that I knew that big word and they could converse with me! Damn doctors.

My mom never thought she wanted chemo at all, especially since her symptoms weren’t too bad, so I advised her to wait until she felt really bad. About 2 weeks after that, she was so nauseous and in such discomfort that she thought she’d give it a try. I called the oncologist and asked him pretty much for a guarantee that chemo wouldn’t make her quality of life WORSE – of course there are no guarantees, but of course an oncologist’s job is to push chemo, no matter what- I asked him what we should do if we didn’t get chemo, and he said, “I don’t know – but you wouldn’t be seeing me as your doctor anymore.” Oncologists only know chemo – it’s their religion – and hospice workers are the opposite and they always oppose chemo in favor of palliative care. Both sides can be too extreme and fanatical, as every case is different and some people would benefit from chemo, some not. It’s a really tough call to make and there is no right answer, because nobody knows. My mother also said she would try chemo because if she did nothing she felt like she was giving up and that depressed her – she was still holding on to hope, understandably so. So I guess it was worth it for her peace of mind, though that didn’t last for long. Long story short: you’re letting your father make his own decisions, which is the right, loving thing to do – but just make sure he’s not doing it to make the family happy and he’s doing what HE wants. And if you think the chemo is making things WORSE, then do what I did and just take over and tell him he has to stop – or at least take a break. It might be a relief for him to have the decision taken away from him at that point. Actually, my mother’s first chemo treatment, after the side effects went away, gave her about a week of feeling a bit better – so chemo wasn’t ALL bad. The second treatment just knocked her for a loop though, and I don’t know if it’s because she was so far gone with so many tumors, or it just sapped the last of her strength.

I’m telling you all this partly out of the need to go over my mother’s story till I’m blue in the face, but mostly because I hope it may help you when you have questions about your own course of action, and/or similar experiences and questions crop up for you. You’re not alone in this and I wish I could relieve some of your burden. You’re doing a great job of taking care of your dad: respecting his wishes, being there for him, savoring each moment. That is the greatest gift anyone could ever ask for – don’t let annoying relatives convince you otherwise! You are a very wise and caring person and your parents must be so proud of you – and relieved to have you there. When my mother came home to hospice care, 2 weeks before she died, she begged me, “Joyce, please stay with me – no one else knows what they’re doing , they’re a bunch of nudniks.” (My mother loved to call people “nudniks” and a word she coined herself – “jablooks.” ) It was my honor and privilege to be there for her when she needed it and I was touched that she asked me – she wasn’t the type to ask for ANYTHING as she was so proudly independent. I’m sure your father is relying on you and your mom in the same way.

I hope you can keep taking one day at a time and basking in the love of your father and enjoying him and his relatively painfree existence for a very long time.
-Joyce

Hello Sonja,
As others have said, your fiance’s health and age are great factors in his favor — the fact that he’s stage 2B is also wonderful, as the cancer isn’t too far advanced. I feel certain that there is a lot of hope there and the chance for resection would be available with the right surgeon or maybe the right treatment to shrink the tumors first.
Many people on this board have pretty long survival with the right treatment, especially if it’s caught early. Don’t give up hope – there are lots of options! Keep reading the positive posts and stay away from the negative ones from people like me who have lost a loved one – usually they’re stage 4 when diagnosed, so you have a totally different situation!

Much hope,
Joyce

Hi Lisa Ann,

Missing U pretty much said most of what I wanted to say, but she put it so much better! I’m primarily very glad to hear that your dad’s discomfort has eased somewhat, as that is the most important thing. I know you and I and Missing U can obsess over where the primary cancer is, and all the anatomical details, and I STILL look over my mother’s medical tests, as if looking for some kind of answer to the mystery of where she’s gone – but some other wise people on this board once advised me that I shouldn’t spend so much time obsessing over the details, and just concentrate on being there for Mom. Easier said than done — I’m the kind of person who has to KNOW and analyze everything, and I guess you are, too – nothing wrong with that! Try to get a second opinion and some more insight, but if it turns out that the doctors just can’t come up with a definite diagnosis, I guess there’s nothing more you can do and you’ll have to let it go. My best friend’s father had the unknown primary – even after autopsy they didn’t figure it out! – and I know it drives her crazy and I sympathize so much with that. The fact is, that even if it IS primary lung cancer (and thank you for clearing up how that could happen, Missing U – I didn’t know about that) – it’s mainly concentrated in the liver and bile ducts and that’s where it’s doing the most damage. So we may as well say that it’s cc, no matter what the doctors may call it, because that’s the effect it’s having on your father’s system. And I do realize now that they can figure out which chemo to use based on the type of cells taken from biopsy – I remember the dr. telling my mother that Gemzar was used on breast cancer, which is a ductal cancer just like cc.

I’m sure your father’s spirits are better in part because of being given some more time on this earth – no doubt about that, and I’m glad he feels better. Even my mother, the most practical, pragmatic and realistic person on earth, who was totally aware that she had a death sentence, would occasionally talk about how she might be the one to beat the odds. Missing U is right – you can’t take that away from them. Unless he becomes so hopeful that it’s totally unrealistic, I would just let him have his hope. But I want to be honest with you and I’m sorry if it sounds brutal and cruel, but you can’t afford to think that he’s going to beat this thing completely. You may buy more time, maybe a year, but the end is going to come and the chances are that he won’t live another 5-10 years. There are always miracles and you should keep hoping for one, but they’re the exception and if you believe in it too hard you will be even more devastated at his passing. I’m sorry to sound so terrible, but it’s just what I would have wanted someone to say to me, so I could prepare— I knew it when my mother was dying, and everyone kept telling me “Oh no – people with cancer can linger for years and years and go into remission” and they made me feel guilty for trying to accept the fact that she would be gone within a few months. I was the only one researching cc, so I had a lot of information the other family members didn’t have, and they were even more shocked than I was at how quickly my mother failed. New Year’s Eve she even had a glass of wine with her friends at her home, and three weeks later she was dead. Forgive my bluntness – I would not say this to everyone, but some people have a need to know and would prefer to be told the probabilities – and I think you’re one of those people. I’m sorry if I’m wrong about that, in which case please just ignore me!!! Please don’t think I’m telling you to give up hope!!!

As for the chemo, I am now very staunchly anti-chemo when thinking of my mother’s case, but everyone is different. I think it gave my mother some hope to think that maybe the chemo would help her symptoms and extend her life somewhat. It didn’t work for her, but it DOES for many people. I would suggest what I suggested to my mother: try it and see if it helps a bit, and if the side effects are very bad, then you can just stop it at any time. The oncologist told us that her quality of life WITH chemo would be “very bad,” and her quality of life WITHOUT chemo would be “intolerably painful.” That was very irresponsible and insensitive and WRONG of him, and of course it scared the daylights out of us. Everyone is different – your dad can give it a try and stop at any time if he wants. At least it’ll make him feel like he has a chance and he’s putting up a fight. The steroids can work wonders, I know – even without chemo. And you can see from some of the posts here that the majority of cc patients who die of this don’t necessarily have bad pain – or sometimes just at the very end. Fentanyl, morphine, all those drugs work wonders to keep the pain at bay in most cases. Your dad may have 6 months or a year of pretty decent quality life, with little or no pain – with chemo or without. I very much hope that’s the case with him.

Lisa Ann, I’m sorry if I come across as very negative, when you’ve been given some pretty good news, really. The best news is that your dad feels better and can eat a bit, and I hope it continues that way for him! I’m very happy that he’s experiencing some relief – both mentally and physically – and you should be glad for that, too, and don’t dwell too much on my doom and gloom. If I’ve expressed myself clumsily, it’s because this cancer is so unpredictable – I want you to be prepared for the worst AND the best. Your dad doesn’t have to know every detail, as long as his spirits are up — my mother didn’t want to know ANYTHING about my research and I probably couldn’t have told her anyway. Just keeping that hope alive in them is so important, as Missing U said.

Hoping for the very best and hoping I didn’t bring you down-
Joyce

Lisa Ann,
You must be SO frustrated by the lack of a definitive diagnosis! I can’t believe that modern technology isn’t advanced enough to find what the primary cancer is in some cases. I may have mentioned that my best friend lost her dear father (56 yrs old) last year (on Father’s Day, no less) to a “cancer of unknown primary origin.” After my mother’s experience, I’ve become convinced that her father had cc, and she has too. It was mainly in his liver and bones and he was given some chemo and radiation before he decided he’d had enough – he died 3 months later. It just makes a horrible situation even more difficult when you don’t even KNOW what entity you’re dealing with.

So, is your father thinking of doing the chemo? I thought he had refused any kind of treatment, but I may be remembering wrong. I’m not going to tell you that you should or shouldn’t advise him to do chemo, as that is a very personal decision and I wouldn’t want to steer you wrong. My mother tried the Gemzar/Xeloda combo and it was very debilitating for her, but I think she was too far along and she already had a compromised immune system so her case was a bit different. I know he must be tired of all the doctor visits, but have you considered a second opinion? IN some cases you can send the medical records to another oncologist and you don’t even have to see them in person, so it would spare your father the exhausting trip.

So so sorry you’re not getting any answers or support! My stepfather had lung cancer and I would think it would be a very obvious diagnosis – it usually affects the lungs pretty completely before it metastizes, so I’m also skeptical of the diagnosis if he doesn’t have any difficulty breathing or xrays show no lung involvement. THen again, maybe lung cancer can manifest itself differently than it did in my stepfather’s case. And how can they know what kind of chemo to recommend if they don’t know the primary origin? I’m just at a loss as to what to tell you, but I feel your frustration and impatience.

I hope someone can give you some better guidance than I have – I’m following your dad’s story with caring and concern and I hope they’re able to do something for him. Did they at least give him some nausea meds or pain meds?

By the way, those are lovely poems you posted and I have to ask if you wrote them yourself – if not, do you know who wrote them? They’re beautiful!

Thinking of you and wishing for the best,
Joyce

Beautiful, Jules. I’m sure he would be proud. Much love and support going your way!
-Joyce

Dear TJ,
Welcome – and so sorry to hear about your sister. I’m sure the pain of her loss is always with you, and maybe it helps a bit to finally get some insight into what took her away at such a young age.

Just wanted to say welcome and you’ll find answers to any questions here – very knowledgeable and caring people on this board.

I wish you peace-

Joyce