Things I don't tell people

AmethystButterfly,

You're not alone in these feelings! There are so many here who understand exactly how you're feeling, and the struggle you endure on a daily basis. Please take comfort in the fact that you can come here and express your emotions to others who really get it. We're all here for you!

(((((Sending big hugs)))))

--The Mods

From a secular point of view, I believe you can find curves with time vs quality of live on the internet.  People who die from old age experience a much longer decline in quality of life than do those that die from cancer.  I hope that eases your mind, because you don't know that you won't be hit by the proverbial bus tomorrow.  But you do have today.

Claudia, My father-in-law had Alzheimer's. It is a horrible disease for the entire family. I never knew when to say good-by to him because little pieces of him faded away each day. I have noticed that I can't think of words or names sometimes. I know that it is probably just age or medication hitting me, but I do worry once in a while although I don't dwell on it. I told my husband that if I am ever told that I have Alzheimer's, I am going to stop all treatments for MBC. I would rather die from MBC than Alzheimer's. Maybe I am crazy.

AmethystButterfly

Your feelings are quite normal. I have had spells of crying, nights of wakefulness, and times of fear. The worst times were when I was first diagnosed and when I experienced progression. Unfortunately, none of us can choose the time or method of our natural death. I have known several people who died from cancer including MBC. They did not all suffer horrible deaths. They did not grow gaunt and gray and skeletal. Pain is usually manageable, especially if someone is in hospice care. Comfort is one the goals of hospice. The process of dying is not always as terrible as it is depicted in tv, books, and movies.

I was diagnosed more than two years ago. I have to admit to you that I did not expect to live this long, yet here I am, living, breathing, enjoying life. Many others have had the disease much longer than I have. Do I still have days when I am sad and fearful? Of course I do, but now those days are few and far between. I consider this as bonus time, and I have every intention of taking advantage of every moment. I also believe that I could live for another 10 or 20 years. Why not?

Your diagnosis is still fairly recent. Do you have any medication for depression or anxiety? They have helped many people. I am glad that you have found this forum to share your thoughts and fears. Do you have only one area of bone mets? Has your MO said anything about radiation treatment?

These threads have helped me through some dark and difficult times. I think that your faith will help you through this time.

Hugs and prayers, Lynne

AmethystButterfly, Yes indeed, that feeling of not knowing what will happen is hard to deal with. It sounds like you treatment is working! That is wonderful WOOHOO! I know, now you are wondering how long it will continue to work, right? I have decided that there is just no way of knowing. I have never asked my MO how long I will live because I told him I was going to live longer than he expects whatever that is. I had an issue (not cancer-related) that required kidney surgery a few months ago. My urologist called my MO to discuss it and make sure he was comfortable with surgery. My MO told me that although he has no crystal ball, he is pretty sure I will be around long enough to make the surgery worthwhile. I felt pretty good about that since the alternative was to have a stent that would need to be replaced every 3 or 4 months for the rest of my life. He told me that he thought that would be a lot of stents.

I understand why you worry that things will quickly things will explode out of control, but your MO does all those blood test, exams, and scans to make sure he can identify issues before they get out of control. I know it's hard to relax. It's so much to take in.

I tend to go on and on, but here is what I want you to remember. You are still on your first treatment, and it could work well for years. There are many other options available if your current medication fails. There are many additional drugs being developed and/or tested. Many of those will also be available to you. Immunotherapy and vaccines are being researched and developed. Genetic mutations are being discovered and identified that could lead to a more personalized approach to treatment. There have been significant improvements in the care and treatment for metastatic breast cancer, and more are coming. I think that you will be here to see your Mama's girl graduate from high school.

Hugs, Lynne

Butterfly, I love your passion. It is good that you are in touch with the roller coaster of emotions this diagnosis brings. I have gone thru many similar feelings.

You are getting great advice and support from others postng on this thread, I agree with what they've all said.

Something I've learned along the way is this: often I use to look to an authority figure, like a doctor, to tell me how things will work out and what the future holds. Then at some point, I started to trust my own self and began standing on my own two feet, facing this thing and dealing with it. I still very much rely on knowing my doctors are making sure I get the right treatment, and I need daily support by coming to this forum and checking in and connecting with others here. However, there are large blocks of time when I am just me by myself, going thru life, and I, quaking in my shoes and shaking to my core, started to take this one small step at a time. Definitely antianxiety and antidepressant meds help.

I frame it as living with metastatic breast cancer, not dying from it. I have experienced some of the best times of my life since being diagnosed, not because of mbc but in spite of it. Yes, that sense of well being was totally and completely destroyed when I first felt the lump and It aint coming back. But I had to move forward because that's how life works.

One more thing that made sense to me was hearing that the opposite of certainty is not uncertainty. The opposite of certainty is open-mindedness. So I practice being open minded about how life will continue to unfold. Because no one really knows, no one is certan how things will work out. Yep, we all wish we could know, know so we can plan. But....in the absence of that, I try to be open minded and truly live today and not some far off future.

Best wishes to you.

like this board! So many things I don't share with others. Family and friends are great!! However....i know they get tired of it just like we do. We just don't have the luxury of not thinking about ..... the fact we have it... what it's done to our bodies...our minds....our wallets....our relationships....ugh.

I am also stable at the moment. So great! But when does the shoe drop??

A question..... I'm on disability. Financially we are great. But.....i do work a few hrs a week and my employer has asked if I want to come back full time. And I do. Really! I just don't know if I'm making the right choice. It won't affect disability issues for 6 mos because LTD and SSD give u a grace period to return back but.... I know it could affect EVERYTHING else. My stamina isn't the same....my daughter is in another state..so my flexibility to visit her would be gone....and my husband isn't for it at all. He's wonderful and would support whatever decision.....

What do y'all think??

Hi ladies,

I was originally staged at IIB, but 6 weeks after my bmx, and quite by accident, my bone met was found. I was on medical leave for 3 1/2 months. That was almost 7 years ago and I've been working full time ever since. I teach first grade and am on my feet all day. Yes, I am tired every evening, but I'm in my 60's, so some of it is related to aging. I do have it easy, once I get home, as my children are grown and I live alone save for two dogs. I also get the summer off and a few vacation weeks during the school year. So yes, I happily returned to work (I adore teaching). I'm beginning to think about retirement, but regular retirement, not disability. We are all so different in how we function at stage IV, so for me, feeling relatively well, there is no reason not to work as I'm not disabled. Definitely an individual decision.

exbrnxgrl.....so glad for you to have been able to work. When I initially left work it was due to running out of sick and vacation. I was Stage III at original dx...it was only 4 mths and it was on my liver then the dbl mx then it kept moving around. So I stayed on chemo and radiation (on and off w/ rads) for three yrs. My LTD strongly encouraged the SSD...... well, now that I've made it.... and things are NED.....I'm VERY ready to work again. I guess my worry is losing any benefits then it return and I have a hard time getting SSD again. I don't want to put my husband in ANY financial strain.....

NettaGER.....half-time would be the best route. I just don't have that option because if I only return half-time then I don't have the option to contribute to LTD with my company....then if something happens and I can't work....No more LTD....I would still have Social Security Disability but that's only half of what I make... LTD makes up the rest....up to 60 percent....

I appreciate you two sharing your situations! AND it just helps to vent.....

I've had clarification that returning to Disability if ever needed....I will have no issues..... BUT....it's a concern if there was a problem....I worked my first 6 mos into dx.....and would have kept on....It wasn't bad. Like I said....I just ran out of time. And as good as work was to me....they could only do so much without backlash.....

I see DR next Wed.....that will tell me alot. And there is a social worker in his office. She might can give me some instances where people returned and what happened if cancer came back.....

Thanks for listening!! I've got to settle this one way or the other....Lately, It's ALWAYS on my mind!

Princess PinCushion;

Are you me? Stage 4, Liver fubared, blood clot in lung kept me breathless for far too long, my head is in a bad place, am doing a lot of crying, and the last insult is that Navelbine seems to have done a number on how I eat. I used to be lactose-intolerant, then went fat-intolerant due to a misbehaving gallbladder, and now seem to be gluten-intolerant. Meaning that if I even try to eat anything with gluten in it, I bloat, have the runs, and get big pain in the RUQ. What can I eat? Even if I eat "good stuff", I'm in pain for a few hours.

And, I'm tired. The house is a mess. etc., etc., etc. Can't stop crying. Can't stop hurting. Well, I can stop hurting, but when I took enough pain meds to feel comfortable, I lost the evening, and told a family member deep dark secrets. I don't remember doing that.

On my end, I need to decide which of two clinical trials I will pursue. And maybe some antidepressants, because this isn't living.

Can we help each other? You know, buddy team?

Just barely hanging on today,

Jennifer

Princess -

It used to be that HER2+ was a bad thing. Times have changed. Herceptin came along and changed one's Overall Survival by several standard deviations. Now, it looks like immunotherapy will only truly work on TNBC and HER2+ as those tumors are what is called "hot". Even those of us with no over-expression of HER2 have enough HER2 to benefit from the CART therapies, as they've figured out canny ways to amplify the portion of the HER2 that they need to aim at. That's one of the trials I'm cleared to enter in - if I can afford the travel and out of network care. 18 visits in an 8 month period and a fairly big bag of procedures they want to do on their campus, not mine.

The only reason Judy Perkins got cured at that NIH trial is that while she had ER/PR+, HER2-, she had 67 somatic mutations, and one of the keys happened to fit in her lock. With the same pathology, I have 10. My homework tomorrow is to go through my Foundation One and the published Perkins mutations, and see if there is any overlap. Two other folk got "cured" as well, a bile duct cancer patient, and - I think - a colorectal patient. The Science article might have listed their mutations as well, but I can' remember.

Replace your sciatica, with my lactose intolerance, gluten intolerance and gallbladder issues. I'm getting tired of brown rice and mixed veg, with an egg. If I deviate at all, I'm in real pain RUQ, fatigued, and spend far too much time in the ladies' room. I'm learning how to handle it, but still make mistakes. I'm non-confrontational, but have learned to be that person at a restaurant. The last mistake landed me in the hospital for a night of fluids and pain management.

My SIL had sciatica with her last baby. She's small. her babies were big, and it just trashed her hips. I didn't have enough empathy at the time (had a bad case of young and stupid). As she puts it, it's like lightening ripping down your leg, and you can't get comfortable in any position. She couldn't take any meds because of the baby. I remember her moaning on the sofa, while trying to tend to two toddlers. Man, I need a time machine to go back and help more.

Ibrance/Femara messed up my liver too. I'd been bone only till that protocol.

We need to stay strong. Immunotherapy is showing real promise, not that "five years from now" promise we are so used to. If we are alive when it comes round the bend, we stand a chance of a durable remission, or at least more time without being on a chemo. There are also several articles I've read that postulate that while the immunotherapy might not kick cancer to the curb straightaway, it will increase the utility of the known chemotherapies, and it might even train the body - slowly - to react against cancer antibodies. All in all, more time for us.

Spouse has just chimed in to ask why you haven't done a cytoxic chemo as part of your late stage treatment? I let him ask these cheeky questions, because he is in the business.

Bedtime calls. Had navelbine today, so I will heed that call.

If it's not too invasive, can you talk to me about faith at some point? I had it, then left it. Sometimes I regret that, and other times my scientific secular humanism seems antithetical to faith. Heavy sigh.

I only told immediate family members.. however, I recently found out that my trust has been betrayed. I am so freaking angry, I can’t see straight. That said, be careful what and who you tell. From this point forward, the only information I will be sharing is when I (hopefully in many years) go on hospice. Until then, f them. They’ve proven they can’t be trusted, so they will no longer be privy to ANY info. Perio