I'm a woman living with Terminal, Metastatic Breast Cancer to the liver. I also hate "pink". AMA

I have about as much respect and use for Komen as I do MADD and PETA.

Agree with you on PETA. I don't know a thing about MADD. Funny how we don't know these things until they touch our lives in some way.

I've been to the rodeo a few times with cancer and my SO's. I'm a bit hinky around hospitals as a result. Thanks for this AMA. Most people have no idea what it's like.

I didn't either. I thought I was healthy and was going to live to be 100.

How did you come to terms with your death? Have you had panic attacks?

I have come to terms with my eventual death by realizing that every single person in the world is going to die, including you. I don't know the date or time of my death either, I only know it will likely be in the next year or if I'm lucky, two. I don't have panic attacks. I did before I was sick but oddly, since I became sick, I've been able to put it in perspective. For ME, it will be nothing - it's my family who will be the ones who live with it and have to deal with it.

I have never understood the "pink" thing. Buy a pink spatula for $15 so $2 can go to research? Why not give that $15 to research/charity to help those with the disease and buy a spatula at the dollar store?

I have no questions for you, just an appreciation for your voice. There has been a lot of breast cancer in my life and they all hate/hated pink.

The worst part is most of that money doesn't go to research. It goes to "awareness" which can even mean the costs of slapping a pink ribbon on their packaging each October. But you are right, if you want to donate money, you can do it without some company mediating. They get to pretend like they are doing something good.

Everybody, make sure you read the packaging! Some of it says "a portion will be donated to breast cancer charities." Um, what charities? What portion?

I love what you wrote in your blog about testicular cancer. I get furious when I see "save the boobies" or "save the tatas." We need to save the women.

I lost my mom 7 months after her diagnosis. Turns out her particular chemo caused the cancer to grow quickly and metastasize. I'm very bitter about the Komen issue.

I'm very sorry for your loss, and more sorry that the treatment made things worse.

Reading that comment you replied to was eye opening in the case of whether or not I'd read your blog. Heh.... I got checked for testicular cancer due to a decent (lol stupid word for the situation) sized lump in one of my testicles. I sat on that worry for a year and the pain always seemed to be there. So glad it turned out to be something trivial and not cancer or sex related. But just to think that I sat on it for a year and even if it were unlikely that it would be a fatal thing it was dumb. If I could trade 20 years of my life to take cancer from everyone I would do it in a heartbeat. Just the 8 hours in the hospital was enough to convince me that it must be hell for someone who actually has a problem. I can't well-wish you enough. I wish I could share that emotional and likely physical pain just to relieve it from humanity. Fuck. (edit: added more details and banter)

Have you thought of skydiving one day? I bet someone like you could convince quite a few people to try something like skydiving that otherwise they normally wouldn't. Use your cancer not just for helping other cancer patients but also for helping others realize and re-discover that life is far too short to be limited by silly inhibitions and the quality of life can be improved so easily by doing what you don't think you can. Good luck and all the love someone on the internet can give.

Hi thank you!

No skydiving for me. I don't like heights but also don't feel well enough now to do it. I am sick.... :)

As a women with a grandmother who was a double mastectomy survivor, I am with you in your feelings over Komen, and the "pink" saturation. Have you been able to comprise a brief statement to share your thoughts to those that may be unaware of it all? Like a quick sentence to answer why you hate pink. Good luck and hope you're here for longer than you expect!

Thanks, I hope so too!

Hmm...a sentence....I think I'm too long-winded to do one. :)

"Awareness has been achieved but a cure has not. The death rate from breast cancer has remained virtually unchanged since before the pink ribbon existed. It's time to pack up the ribbon and tie up the problem by using the white coats of science."

How's that? :)

my wife has the same cancer as you. she was first diagnosed in 2008, had a double masectomy and some lymph nodes removed. In 2010 the cancer was back, in her liver, ribs,bones, etc. at that time she was given 2-3 years to live. Me being a dummy I cannot tell you the names of the different treatments she has been through. We have had a lot of ups and downs, hopes raised and then dashed. our friends and I took her to burning man this year and last, and that was so important for us, spiritually.Having this death sentence over her head has been brutal, terrifying, maddening but has allowed us to connect on such a deep level and really appreciate life and each other, and we are still madly in love. This May she went into the hospital with blood in her stool, which we never found out the cause, but since then she was able to only have 2 or 3 treatments due to first low white blood cell counts and then low platelets. Last Thursday she was taken to the emergency room with trouble breathing. After a cat scan it was revealed that the cancer had spread into her lungs, that it was very aggressive( her cat scan in May, while the most horrific thing I have ever seen, showed no cancer in her lungs) and it was decided then that treatment would not be continued. She is now home and under the care of Hospice, and I'm not sure how much time she has left. We have been married 15 years and have two children, 11 and 13. This weekend we had to have the talk with them. My wife is 38. Through all of this, which is very much engulfing my family and friends, that Iv'e decided to try to stay positive through all this shit. Iv'e always believed that life is not designed to be fair, but as a concept that's easier to swallow than when it is a reality. Give all the love you can to your people so that they can be ok with what cannot be changed. My heart goes out to you and your family.

And, my heart goes out to you and yours. I have always said that I have it easy - my family is the one who is truly going to suffer. I hope your time together is peaceful and you find acceptance. I guess there really is nothing else that we can do. Love her while you have her, and let the kids do so too.

Hey. My sister died of cancer three years ago (lymphoma), and my Dad last year, also lymphoma. Both lived a long time with it, better than any of the docs told them. So I have my smiles on for you. You sound like my kinda woman (I'm a woman too, so no come-on).

You also sound more than a bit bitter about media ignoring your anti-pink message. Why do you think Komen still has the press' attention (if not personally, at least all the Pink fundraisers) even though it's now come to light what a wasteful and self-serving organization it is?

I'm very sorry about your sister and father. My heart goes out to your family.

I wouldn't say I'm bitter but I would say I'm very disappointed in the waste of money. Organizations like Komen take in hundreds of millions of dollars and spend very little on grants to researchers - some say as little as 15%. Most of it is funneled back into their awareness campaigns and pink parties. Having worked in a school system, I think pretty much everybody is aware of breast cancer - even in elementary schools students talk about it so awareness has been reached.

I think Komen and their kind have the press' attention because the story of women coming together, fighting in unity to conquer a disease under a pink banner is compelling and nobody wants to go deeper. Who doesn't want to be a "Survivor or "Warrior" or overcome a negative event? What is ignored is that many women, through no fault of their own, will die of cancer and the only thing that can stop that from happening is smart doctors in labs figuring out why cancer cells grow and spread. And, most of us who will die were diagnosed at early stage so "finding it early" to save your life is a myth too.

Hi there! Thanks for taking the time to do the IAmA. I am really sorry about your prognosis.

I was actually wondering about palliative care, what has been your experience with it? What are some things that you feel could be improved? (Would it be helpful if they tried to organize a social calendar, and they could help you meet people you'd like to see again?)

I'm not sure I understand the question about meeting people I'd like to see again? I do have people who come to visit me and sometimes I am able to go visit others, but pain and discomfort (and mainly, the need for tons of sleep) keeps me home. A few weeks ago I had a period where I felt really good - I even did some shopping! It didn't last but it was nice!

Palliative care has been wonderful and I'm surprised how extensive it's been, but maybe it's not what you think. It isn't hospice, it means that the treatments are meant to extend life but not cure you. They are balancing what will help me live the longest against what is too difficult to do - there is no point in doing something really hard when you won't survive.

For example, they still give me chemo now but if it's too hard on me, they will change it or lower the dose, whereas when they are trying to save you early on, you put up with it. But they still can be aggressive treatments, such as the gamma knife I did in August. It is not expected to cure me but hopefully, will put me in remission or at least slow down the cancer growth. The goal is to live a good and long a life as I can while being treated. The goal for hospice is to end all treatment, but ease symptoms as they appear.

You go from curative, to palliative, to hospice.

I am still not ready for hospice yet.

And hopefully, you won't be for a long time yet!

I went through this with my Mom who had a stroke, was admitted to the hospital, and simultaneously diagnosed with metastatic pancreatic cancer. At one point, they switched to palliative treatments, and we were still hopeful, but then one day, the doctors brought up hospice. My dear Mom passed away on the day when the hospice people came to talk to us about transferring her.

I know this is late but something similar happened with my father. He was diagnosed with stage IV pancreatic cancer and actually survived a long time with it (one year...for pancreatic cancer that's about as long as you can expect), but looking back I really wish we had gone right to hospice care. The chemo was really hard on him and he felt MUCH better after they stopped treatment. He was only on hospice a week before he went into a semi-comatose state, before passing away a week later.

I'm sorry about your father. I can understand that - it's a balancing act at this point. The chemos haven't been too awful for me so right now I am managing. I'm not healthy by any means but wouldn't say life is meaningless or I'm super suffering. So I am not ready for hospice yet. I know there will come a time and I hope I know when that is. People don't usually live too long after calling hospice - but some do.

You go from curative, to palliative, to hospice.

Just to say, this isn't always the case. I thought it was, but spent a short time working at our local hospice, and found out that some of the patients weren't terminal at all (eg respite and symptom control for conditions such as MS). There were also people discharged from the hospice with a prognosis of months or more. This was in the UK so it's possible it's a geographical difference, but yeah - our hospices aren't only for the imminently dying. If you know someone who's sent to our hospices that isn't a clue about their prognosis!

I wish you all the best with your continuing care.

Thanks! Here you agree to give up all treatment when you go into hospice. But it isn't binding - you can change your mind, leave hospice, try something new, then go back. But to get in your life expectancy is supposed to be under 6 months so here it is for those who are dying. However, sometimes people do well, even with dire prognoses and end up leaving.

Breaking Pink.

Awesome!

You seem like your illness has given you an almost Herculean desire to "get some shit done" if you will pardon my use of base vulgarities to get the point across. Did you have as strong and undeniable drive and ambition before?

No, I have never had any drive before, I always say I have ADD and can't concentrate. :) No career - I was a bartender, an IT Manager, a school secretary...my only passion was raising my children. I did have one issue in my town that I managed to stop singlehandedly (a PETA-based school funded by taxpayers that I sucessfully stopped) but other than that, I'm kind of lazy and lose interest. But this illness has certainly opened my eyes to what is going on with this pink stuff, and I do feel like I should help educate others. Unfortunately, I can't lose interest in this as it is my life.

What's so bad about PETA?

It wasn't about PETA as much as what schools should be. I don't think a public, taxpayer-funded school should be based on a philosophy such as animal rights. Or, hunting. Or Scientology or a Pink Ribbon. :) If it was a private school, I'd have been okay with it but using the philosophy the way they were going to do it, and seeing some of the curriculum - completely inappropriate for a public school. It was indoctrination, pure and simple, and that's what parents are for. :)

Did you have yearly mammograms prior to diagnosis?

How were you diagnosed?

Would you go through the same process of treatment if you could go back and change it.

I had mammograms in the past but not yearly because of my dense breasts - they couldn't see a lot on mammogram I was told. However it didn't matter, I was still diagnosed early stage.

Surprisingly, most women who end up Stage IV are as well. (I think only about 2 to 5% are diagnosed late stage and yet something like 1/3 eventually end up late stage.) Nobody really understands why breast cancer spreads in some women and not in others and that is an area where research needs to be done, and one reason why I am adamant that money should be spent on that. Also, there is a disease called DCIS, which is not breast cancer but could become breast cancer, and so women have to treat it as if it was cancer. More research needs to be done into what DCIS becomes invasive and which doesn't. Right now, mammograms are finding DCIS that may never have hurt a woman and yet they have no choice but having mastectomies for it. Its like what's you've been hearing about with men and prostate cancer - these yearly screenings may be finding disease that would never harm people and might even go away.

I was diagnosed by finding a lump. It grew alarmingly quickly - I believe I found it in May and by July it was noticeably bigger and was dimpling. Because I had fibrocystic breasts and many lumps/cysts I was used to them, so at first I wasn't concerned at all but it changed quickly enough so that by the time I had the official word I was pretty sure it was cancer.

Hmmm... would do the same treatment? I was given standard of care and excellent treatment. The only thing I would have changed, if I knew then what I know now, is I wouldn't have done the mastectomy or recon. It is not like an implant and has been uncomfortable, and has caused my all sorts of back and shoulder problems. The few women who are diagnosed late stage don't usually have mastectomies and I kind of wish I hadn't - it would have taken at last one problem away.

Although, the cancer hurt too but not as much as my shoulder problems.

Thank you for replying. I as well have dense and lumpy breasts. I am 37 and have not yet gone through the mammogram process, because my doctor says it would be difficult to see on a mammogram.Did the lump feel as deep as the fibroids, or noticeably different? By lumpy I mean, you can feel the glands and such, if you are looking. They are not like a bag of marbles. Just incase someone else reads this and is perplexed.

Yes, it felt very different. I tried to tell myself that it was perimenopause and the difference was due to hormonal changes, but it became clear that wasn't true. The lumps I always had, the cysts, were sort of soft, you could push in on them, movable, you know, you probably have some. You can feel that ropey glandular tissue that's normal for you. This one was hard as a rock, felt kind of jagged even, really like a stone in there. It felt attached to the chest wall (although it wasn't), you couldn't move it around. I also had a burning pain with mine, which is not normal but is also not that unusual either. I had pain anyway but this was different, and just located in that one lump and didn't go away during menstruation.

You can tell the difference but that is looking back on it now, nothing is that obvious at the time. I didn't go to the doctor right away - I waited a cycle as you know sometimes the normal lumps ease up or stop hurting or shrink during your period. This one didn't. And, it started dimpling in and then I knew it was bad news.

The thing about self checks is not really so much as looking for lumps as it is looking for something different than normal for you. So if you, like me, had a lot of lumps (I called it a cyst farm, I think I had seven in one breast, the non cancerous breast) than you have lots of lumps, so get to know what they feel like and what's normal. If one is different or unusual, you should get always it checked out. Even then, there are lots of things that go on in there that are not cancer.

I'm not a huge fan of mammograms but I think you probably should go get your baseline even with dense breasts so there is something to compare to in the future. And, because yours are dense you need to pay more attention to those lumps and fibroids because it may not show up on a routine mammogram, even if you did have cancer. Pay attention yourself and always go in if you think something is different. Trust your instincts.

You're utterly fucked.

Not recently, but maybe tonight ;-)

No, I mean you obviously have cancer.

No, they have been this way since I was a teen. It is very commom in women with large breasts.

[deleted]

Mine were large, wanna see? I still have one left. LOL. :) j/k

The mastectomy caused shoulder pain? How come, what happened?

I think it was the recon and not the mastectomy but nobody really knows. It started immediately after my recon surgery though, which was about a year post-mastectomy. My shoulders froze - I got "adhesive capsulitis" which is not at all uncommon in women who have had breast surgeries. Unfortunately for me, mine showed up in both shoulders and isn't healing. I've had several cortisone shots and it's been a couple years, but my right shoulder is still painful and I have loss of ROM.

Hey sister!!!! I am so pleased to hear a warrior such as yourself say that about pink washing! I find the whole thing a money grabbing exercise preying on women's emotions. Like you said everyone is AWARE of breast cancer. A couple of years ago, the NSW cancer council CEO Dr. Andrew Penman received a staggering 68 MILLION DOLLARS in a year. Look, maybe I'm jealous, but I don't think so, I feel that sum of money is absolutely unwarranted. Okay, two questions- Have you tried any alternative medicines? What is your take on the idea about dairy foods and their link to cancer? I haven't watched your vid yet but I will once I post this comment :) My heart truly goes out to you! Xx

Agreed!

Okay on the alternative medicine, no, I am very much a woman of science. My youngest son wants to do research, in fact, or something in biology anyway. So unless it's proven, tested and tried, I'm not interested.

As for dairy foods and their link to cancer? I don't think anybody knows what causes cancer. Maybe hormones in dairy foods have added to the problem, maybe not. I don't think there has been any real research that has said that dairy foods cause cancer, so I don't believe it. And, if you go by me, they don't. I don't think I've had a glass of milk in my entire life and I don't like dairy. :) But of course, one woman's experience is nothing. I was always a super healthy eater, vegetable lover, all of that. I don't think I've had a soda since I was 15. Fat lot of good it did me. :)

Well, some diary cows in the US are given growth hormones (rBGH) to increase their milk yields, which can increase the level of other growth hormones (IGF-1) in the cow's milk, which is linked to accelerated growth and cancer.

A slightly dated (1996) paper on the subject- Unlabeled Milk from Cows Treated with Biosynthetic Growth Hormones: A Case of Regulatory Abdication

Yeah, I'm not saying it can't be a cause, just that it hasn't been definitely proven yet. Certainly, there is a strong link to HRT and breast cancer and it wouldn't surprise me that additives in milk also played a role. However, I think cancer is very complicated and we are never going to pinpoint it. Some people smoke heavily for 60 years and don't get lung cancer either - so there is some combination of human biology and lifestyle going on, and who knows what else.

what about sex and cancer? if it's too much of a live wire, I understand.

Well, my kids will read this so I'm kind of shy but let's say "kids, mom and dad don't do that stuff." :) Cancer in the abdomen hurts, FYI.

I'll get on a bigger topic and discuss how women can feel after mastectomy. First, people say, "Oh, you'll have recon, your new boobs will be perky" but if your face is blown off by a rifle and reconstructed, you don't get a movie star face. Reconstruction is very different than enhancement - it doesn't feel the same to a partner and you can't feel anything at all - and for many women it can affect their sexual self-esteem. I think that this can be overcome by tenderness but it isn't easy always and takes time. No matter how much we women know we are more than the sum of our parts, sometimes our parts matter. :)

"Cancer can be funny, just not for very long."

Damn. That line. In a similar vein, do you think there are any comedy acts, movies, television shows, books, songs etc that particularly resonate with your experience of cancer? For example, I love the book The Fault in Our Stars and the movie 50/50 but I have no idea how they are viewed by someone who's actually living through that.

Oh I loved the Fault in our Stars. That really rang very true for me. The movie 50/50, not as much. I liked it but a lot of it felt forced, which was odd because I know it was based on a true story. Maybe it's just because I'm not a 27 year old male, but I just felt like some of it wasn't real or didn't portray what somebody going through cancer would be into. Most of what you see about cancer and TV doesn't seem real to me.

I have done 7 different chemos and have never thrown up once, and most people have not, the pre-meds are too good now. I obviously know a lot of cancer patients now and most of them work (I did until 2 years ago) and live relatively normal lives. But I defy you to see a TV show or movie where the person who does chemo isn't puking. (And, the REAL problem is constipation but they can't show that!) And, they lose their hair (not all chemos make you bald, by the way) but never their eyebrows or eyelashes. And, they just don't show the ups and downs and big swings that happen with this disease, which I guess is impossible. the ones who die, they die this lovely declining death and it's not that way for a lot of us.

I love the show Parenthood but I really didn't like Christina's storyline with her breast cancer. Some of it I empathized with but a lot of it felt too "hollywood." The one I relate to on that show is her friend who she did chemo with, who is still sitting there, sicker and sicker, each time Christina goes for her 3 month check up. That one is me. :)

Books are typically much better because they can delve into real experiences more.

Does anyone remember the success of the ACT UP campaign -- AIDS Coalition to Unleash Power (ACT UP) back in the 80s. They brought mega international attention and money to AIDS research and now the disease is not a death sentence. Having Breast Cancer I am fully aware there is a serious difference between the diseases but I KNOW that we women are not ACTING UP internationally demanding a cure or that the resources get to the real researchers. I just cannot find a group to lobby with. Why can we not organize ourselves and get in "their face" hot pink!

I think the media has to be on board and they really love the great pictures they get of the pink runs and all of that - every paper and TV news show in the country does one in October. They don't really do a lot of research into it deeply and rarely, if ever, discuss where money goes - they just focus on the survivor stories.

The New York Times did a great story on "our feel good war on breast cancer" (link below, highly recommended) that goes into some of this more deeply, but stories like this are rare indeed.

The problem is, most women will survive breast cancer, so they get together with other survivors and pat each other on the back for surviving a difficult thing (and it is difficult, I'm not saying it's not) but those of us in wheelchairs or on oxygen or in too much pain to go out - they don't relate to us. It's a different disease in a way. Those of us with mets are dying, few of us live more than a couple of years. What we need is breast cancer survivors, the early stage ones, to think beyond awareness.

Since breast cancer can come back at any time - they could end up like me and the ones who do - they change their tune. Until all breast cancer patients, early stage or not, come together and say "we don't want to be infantalized anymore" nothing is going to change. It is women who had cancer who wear the "save the tatas" shirts, like it's about breasts instead of lives.

There are a few organizations out there. BCAction is one. Metavivor. Early stage or family members or concerned citizens need to be involved with these groups because we are too sick. I like StandUp2Cancer, which is not for breast cancer specifically but does use all of their money for research.

It's beyond me why anybody would think awareness is necessary anymore but some do.

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=all&_r=0#commentsContainer

I'm very sorry for your sickness. Is there nothing that can be done?

Thank you. There is lots they are doing to try to keep it under control, but in the end it isn't curable. We are just buying time. And, that's important to me as my goal is to see my son graduate from high school.

I'll be praying for you. God bless.

Thank you.

Two questions:

1. What are your thoughts on assisted suicide for terminally ill patients and have you seen the documentary How to Die in Oregon?

2. What is your response to the cynics out there who claim that fighting cancer isn't 'brave' and cancer patients shouldn't be regarded as 'heroic'?

Thanks for the AMA and hang in there!

I have seen the documentary and found it compelling.

You know, I'm kind of conflicted about assisted suicide. People should have control over what happens to them, but I also don't think they have a right to bring others into a decision as grave as that one. I also think that depression and fear plays more of a role in these decisions than these groups give credit for. I do think that most of us (who go through hospice anyway) get enough meds at the very end to prevent the pain many fear - in my advanced directive it even asks if I want enough pain meds to control my pain even if it shortens my life. But I imagine that isn't a certainty and the end can be bad, but it isn't always.

Mostly, I think the government should stay out of private decisions between sick people, their doctors, and family. That goes for assisted suicide as well as treatment or anything, really. It's not the state's business what somebody does or how they choose to die.

As for the cynics, maybe I am one. I don't even like the term "fighting cancer" or all the other military-style phrasing that comes with this disease. I'm just a patient being treated for cancer. And, I know for a fact I'm not a hero or brave. I am a person who was put in a terrible position and I have no choice but to deal with it and you can bet your ass that if I could not have this disease, I would get rid of it!

I think brave, heroic people are those who deliberately put themselves in harm's way for an outcome that benefits others. Firefighters, soldiers, policemen, the guy down the street who pulls somebody out of a car wreck. They all had a choice as to what to do. I got a disease and I have no choices really - I can treat it for as long as it will be treatable, or I can die. I suppose one could argue that I can choose to make the best of it or sit and cry but I don't think people can cry for four years! :) I choose to make the best of it because I have kids and that's what moms do - we set examples for them. But having a disease, no, I don't think it's a brave thing.

I don't think having the disease makes you a hero, but you making the best of it, being strong for your kids - that makes you a hero. You are on here educating us on how to donate our money more wisely so that we are actually contributing to saving more people instead of blowing it on a dumb campaign. You are very sick, you have the option of laying around doped up on meds and doing nothing. But you're not. You're still trying to make things better for others. Even if it wasn't your choice to get sick, I'd still feel right saying you're a hero. :)

Well, thank you. :) I am kind of doped on meds though, lol. :)

My mother died of precisely the same condition you have. As I sit here weeping recalling what she went through in the last two weeks of her life I would implore you to give the Oregon option very serious consideration.

I'm so sorry for your loss. Was she on hospice? Was she in a hospital? I do want to die with grace and while I know it is not always possible - I also don't want to scare or torture my family.

I love your brutal honesty. There's nothing worse than having everything sugar coated and essentially be lied to. My grandmother is in remission of lymphoma, and my father-in-law of prostate cancer. My friend's mother passed away from breast cancer two weeks ago. She was diagnosed 5 years ago, and was in remission for the last 3, but it spread to her lungs and hip. They ran out of treatments for her. She told me in her final days to spread her ashes at the Grand Canyon, because she's never been there, but the photos are so beautiful, she wants to be there forever. What is your favorite spot on earth? Tell me about your fondest memory of that place, or what you love about a place you've never been.

First, I'm so sorry for your loss and I hope your relatives' remission lasts.

My favorite spot on earth is Hawaii. The scent of plumeria in the air, the tiny raindrops that blow off the lush hillside, the constant rainbows, the sound of the surf, palm trees swaying overhead - I just loved Hawaii. I went there once for a birthday and it was right before I was diagnosed. I am so happy I got to go - it had been a dream of mine that came true and was everything I thought it would be. I didn't know an entire island could smell like flowers but it did.

I haven't traveled much but I love the thought of beignets and coffee on a balcony in New Orleans, or the soaring roof line of the Sydney Opera House or the the a hut on stilts on the coast of Tahiti or the turquoise waters of Bermuda. If you hadn't noticed, I kind of like oceans and beaches. :) There is a lot of beauty in this world, but I find it right in my own backyard, feeding hummingbirds and watching butterflies.

Thanks for the kind words.

It's almost incredible that you picked Hawaii. I am planing my first trip there in March. I've heard the typical "it's beautiful, it's pretty" review of the islands, but your words almost put you right there. Toes in the sand, eyes closed, everything you'd hear and smell. It makes my heart even flutter! I'm glad you have such vivid memories of a place. It inspires everyone to really take it all in in the moment. I will think of you when I smell the plumeria on the air for the first time.

I hope some beautiful butterflies visit you soon :)

Enjoy your trip, you are going to love it! I was in Maui, Ka'anapali Beach. Magical.

I find it admirable that you still manage to find humor in such a horrible situation. The truly strong people are the ones like who who can face adversity and not let it destroy you. I have no question just wanted you to know I admire that a lot.

Thanks!

Closest I ever came to cancer was a scare when the doctors were pretty sure I had lymphoma. I was pretty certain I had it as well, and was at peace with the realization. I was only 16 and content with dying as I had a pretty easy life, but also one with no real promise. Turns out I just have permanent hard, inflamed lymph nodes for no particular reason. Despite all the tests they conducted, nothing came up. Funny how you get so wrapped up in the idea of dying, it becomes a comforting fact. When the test showed up negative, I was almost sad. I wish I could give you my health, someone who probably wants and deserves it more.

I kind of understand that in a way. At this point, after 4 years of weekly cancer treatment, my identity is as cancer patient, and if I was miraculously healed, it would take a while for me to change my focus. I'd be happy about it, make no mistake! But it would be hard not to think of myself as cancer-girl.

But I don't think I need your health more than you do, and I wouldn't take it from you if you could give it. I hope that you look into depression and see if you fit the profile because you have a precious gift, one you deserve to have, and it makes me sad to think there are people who have something so wonderful and don't think they deserve it. You have a long, wonderful, happy/sad life to live and you deserve to have the joys and sorrows we all have.

First of all I just wanna say that I teared up a bit while reading your intro. You have gone through so much , and have a potentially devastating road ahead, but you appear to go through it with such grace and humility. I came here to say that I, as a male, only hope to be half the person that you are if I ever go through a tough time.

Now for my question: I noticed you said that cancer can be humorous . Do you find that other people can share your sense of humor about it ? And thank you so much for doing this AMA, I will constantly be thinking of you this month and every month after.

Such kind words, thank you!

I think most people in a devastating situation like this look to the person who is going through it and take their cue from them. So, in our family and in my work, we have joked about it a little, me mostly, but the door is open and we don't take it seriously all the time. You just can't be sad or cry or mourn all the time or you are wasting precious time.

I do have a bit of a gallows sense of humor. That doesn't come across to everybody though, and there have been a time or two where I have shocked somebody who doesn't know me well. So I try to be careful when it's not a good friend and it comes up.

My coping mechanism is humor, others might have something else. But humor does open the door to talk about it. While I understand that some people may not want to talk about it, I think most people not only want to, but need to, and when you can do it without scaring other people, you get a better reaction. If you can throw a joke in while you are complaining about the pain or constipation or whatever, it takes the edge off for everybody. :) I think the fact that my blog has gotten as many views as it has comparatively is that is has been a humor blog and not just a litany of complaints.

First of all, I wish you the absolute best and hope you have longer than the doctors say.

I guess my question is, how do you feel about your quality of life at this point? Is there anything that, in hindsight, you would have done differently in terms of treatment/care(would you choose to forgo treatments that prolonged your life but diminished its quality)?

Except for the mastectomy, which I mentioned earlier, I wouldn't change anything.

My quality of life is quite diminished - four years of chemo is going to do that to you. I spend a lot of time just sitting, reading, playing on the computer - moving is painful. I sometimes have times when I feel good - a few weeks ago I was suddenly energetic and felt great and I started thinking of vacations and planning things - and it was temporary, I went back to sleeping a lot and taking pain meds. That's cancer for you, ups and downs.

As for treatments - my son was 12 when I was diagnosed and he needed a mom. The treatments I've done have kept me alive, and the truth is, I don't know what would have happened if I hadn't done them. I had half my liver removed - a very difficult surgery to be sure. I got sepsis and c-diff 2 months later, which nearly killed me and left me with colon problems. And, almost immediately, cancer came back in what was left. So should I not have done that surgery? Well, I don't know because maybe it would have taken over the whole liver by now and I'd be gone. I'm still here and that's what my goal is, even if I can't do what I used to do. My goal is to be around until my son graduates high school and moves on to college and then I'll reevaluate goals then. :)

You just make the best, most informed decisions you can at the time, and then don't look back.

Have you heard anything about 3-bromo-pyruvate for liver cancer treatment?

It was developed for cancer treatment by researchers at Johns Hopkins. Unfortunately, the chemical is too cheap, which means no prospects of making a profit, which means no way to afford the expense of FDA approval. The researchers had to move to Germany, where people are allowed to consent to experimental treatments if their disease is terminal.

In first year med-school (I'm not a doctor, just somebody who went to first year med school as part of my engineering program at Hopkins), we had the chance to speak with the researchers and a young patient from Germany who was recovering quite well from a cantaloupe sized liver tumour.

It seemed like a miracle cure, but I haven't heard anything about it since then (about 4 years ago). I'm curious if this is something people treating liver cancer are aware of? Or talk about? Or have opinions about? The patient was making a dramatic recovery, but I don't even know if he's still alive or not.

The wikipedia article has a few sources. Peter Pedersen is involved with the research on most of them. He was my lecturer at the time.

p.s. I'm looking through your website. I love your writing style.

Thanks for the compliment!

A quick google (very quick) looks like it's super preliminary. I did read about one patient who was given it who died a year later, but it's definitely not ready for prime time yet and it looks like a researcher was fired for falsifying data? Not your lecturer.

I do have a fantastic oncologist who is up on the latest treatments and who is also not afraid to refer me elsewhere if he thinks it's appropriate and if there was any buzz about this in the medical world I've no doubt he'd let me know if I fit the criteria. I also have not heard about this from patients although I have breast cancer, not liver cancer. So far, it looks like flimsy dreams but who knows, that's what herceptin looked like 30 years ago.

I am positive that if it cured cancer, somebody would figure out a way to make money off of it. There is always a way.

I'm sure you mean well, but suggesting alternative or experimental treatment when you aren't an expert in the field isn't great. Surely every treatment option are being considered. Also, she has breast cancer that has spread to the liver. Not liver cancer...

True. I'm sure he meant no harm (nor did he do harm) and at least he mentioned something potentially (but far away) real, unlike the many, many people who tell you about what will cure your cancer. The only person who has not suggested an oil, diet, a program, or a sleeping position to cure my cancer has been my dog.

And, I'm sure she would if she could.

I can tell you spend no time feeling sorry for yourself, but I just wanted to say that I am sorry you are going through this and I can't believe how you have chosen to live your life with cancer: with grace, with humor, with strength. Hats off to you.

Thank you! Bad things happen to people all the time. Why should I be any different?

I'm a 6 year survivor and I couldn't agree more with o.p.. I also hate seeing the bumper stickers that say "save the tatas". To me, it isn't about saving boobs, but saving lives.

You said it, sister. It's not about "saving second base" or 'yeah, they're fake, my real ones tried to kill me" or "fight like a girl" or any other cutsey slogan that diminishes this disease. It isn't about breasts, it's about cancer.

I'm all for humor but these slogans have become so much a part of breast cancer that one of the most common things people say to us is "Oh, well, at least you got the good kind of cancer, nobody dies of that anymore." That means the wrong message is getting out.

Reading this AMA has really brought home to me the reality of breast cancer. I have a long history of it in my family and unfortunately a couple weeks ago my mother was diagnosed with stage I breast cancer and is about to start chemo maybe even this week.

This is completely unlike anything i've ever had to experience in my life before and was wondering what your family and friends did/do to support you through this difficult diagnosis?

People were so nice! Especially at first, now I imagine they probably think this has been going on way too long, lol.

But they brought me food, which was super helpful as I couldn't cook after the mastectomy. Gift certificates to Schwanns. Chemo was pretty easy and I was normal for a while but got tired near the end (or what we thought was the end) so that's when I needed help the most - that and surgery. So plan accordingly - women need help right after surgery and at the end of chemo.

Food, housecleaning, watching a movie, or bringing a book or cookies or something, those are great things. Sometimes you need to get your mind off yourself so just going out and doing something normal is good. It's just nice to know people are there to support you and are thinking about you. Cards, notes, emails, flowers - people have been very supportive. And it's funny, people you think never even noticed you suddenly want to help. It's great the way people can come through.

I wish you the longest best life possible :) I was diagnosed with testicular cancer earlier this year, did chemo all summer, and am hoping for the best. 5% of my tumor was the kind of cancer that will kill you, so I am hoping it did not have time to metastasize, but I really don't know how long I had the tumor, so we will see. I was stage 1B. I felt all year like I was losing my mind, and chemo has made me feel like a different person. I got engaged a week before I was diagnosed, and I am not even sure if I am in love anymore. Booo to cancer and the things it destroys. Here's to less destruction and getting the money to the right places.

I'm sorry you had such a bad time. The number 1 fear of ALL cancer patients is that their cancer will return - with many kinds it does, even when you are early stage (like breast). I think that fear fades over time but it is a hard time.

I'm not surprised your relationship is struggling - I do think cancer changes you and makes you re-evaluate what is important and what you want in life. Hopefully, you can sort it out and take your fiance with you on your thought process and come out the other side with a better relationship. hugs to you.

I've been reading your blog since the month my sister died, July 2011. At that time, I desperately needed to read/hear the voice of someone who in some way lived what she lived. To share a brief bit before getting to my question, my sister was 27 when diagnosed with breast cancer in 2002 and was, at the time, the youngest person our local doctors had ever treated for BC. She went through chemo, a lumpectomy, and was deemed "cancer free" about a year later. After that, she took tamoxifen for 5 years, thought she was "cured" and went on living, and tried desperately to forget cancer was ever a part of her/our lives. In February 2011, she was diagnosed with both ovarian cancer (IIIC) and uterine sarcoma (IA). Her doctor at the time remarked that it was probably the tamoxifen that had caused these new cancers. She underwent a complete hysterectomy with debulking and afterwards, they treated the ovarian cancer first with chemo. In April, she was told they could find no evidence of disease (NED). By July, that NED turned into "masses too numerous to count" in her liver, lymph nodes and pelvic bone-- the uterine sarcoma had spread fiercely. She passed away from liver failure 3 days after that scan, leaving behind a 4 year old son. All of that is to ask you, what do you think of the use of tamoxifen, which is known to increase the probability of reproductive cancers? It sounds like you weren't treated with it, but I know many have. I know science is doing the best it can with the tools it has, but damn it if I don't feel more than a bit bitter that science may have caused the cancer that ultimately took my sister.

I too struggle with Pinktober and have difficulty going in to any stores during October. I think we can all agree that awareness has been raised and now it is time to eradicate this disease, once and for all. The pinking and messaging also has an overt sexualization, which should really bother everyone. The tagline "save the boobies/tatas" certainly sets up a dichotomy between the woman (or man!) and her parts. Sadly, in my sister's case, they were able to save her "boobies", but weren't able to save her life. I now try to crusade for giving money to organizations that actually fund research, and to stop the madness of all these pink walks and pink products. I also have signed up for numerous medical studies so that doctors can study what hereditary factors may have led to my sister's cancer at such a young age.

Thank you for all that you do everyday. I still follow your blog religiously as a lurker, and I value your humor, humility and insights.

I'm so sorry about your sister, what a sad story. Your loss must be excruciating.

If you've read my blog, you know about my "cancer friend", who is now only 28 but we were diagnosed the same time, in 2009. She was 25 and she had IIIc cancer too. So far, she is cancer-free and I hope she stays that way. We still have treatment together - I got in for herceptin/perjeta/zometa and she goes in for fluids and anti-nauseas. she is taking Letrazole, a hormonal as Tamoxifen is, and she finds it very hard to tolerate.

I was on tamoxifen, but my cancer relapsed only 3 months after I started it. I hated that drug, found it difficult, so asked if I could stop it. A biopsy on my liver showed I was only weakly ER+ so I did get to stop the hormonals. I was warned about the dangers of uterine cancer while on that drug and in fact, the lining of my uterus thickened in only a few months on it.

What I think though, is that all of these drugs we take have risks. The ones I take now - Herceptin/Perjeta - have the risk to cause heart failure, so my heart is monitored every 3 months. Zometa can cause Jaw Necrosis (so I can't go to the dentist). And, when you have a serious disease like cancer, and a Stage like IIIc, and also being young where it is more aggressive - all the things your sister had - your choices aren't very good. You can take drugs that cause side effects in some (but not all) or you can take the chance that your cancer will return (which in your sister's case, was a very high risk). We have to evaluate the risk/rewards and go from there. As long as your sister was informed and understood her choices, I can't say the medical profession did anything wrong. Tamoxifen has helped a lot of women so I wouldn't think we'd want to remove it from the arsenal of anti-cancer drugs. But I can understand your bitterness - we always want to think we will be in the "win" category and not the "side effect" category.

Your sister's tale is a cautionary one - those side effects mentioned on the bottle or packaging are not for other people - they can be for you. And so you have to pay attention and understand that they come with risk. Even tylenol comes with risk.

One thing I wanted to ask - did your sister have the BRCA gene test? Perhaps, if she didn't, it is something you should consider. It may be that genetics played a role in what happened to her as well.

I'm just sorry for your loss, and the child who will only know his mother through stories.

Would it be more practical and efficient to find a way to make common cause over something with Komen? BTW I Love your writing, love your FB page! Mwahhh!

Thanks you! :)

Someday, Komen will realize that they are on the wrong track for the times, it's not 1985 anymore. Or the population will and then poor Nancy Brinker will have no way to pay for her plastic surgery. But until then, we have to speak against them.

dont have much to say except i hope to meet you in some other dimensions / universe you look like a nice person ( scientists just discovered theres more universes ) i might ad , FUCK CANCER and FUCK PINK RIBBON , wish you well and the longest time frame possible !

Thank you.

Oh Ann! What a beautiful video :) And what a gorgeous, positive, supportive family you have been blessed with! I am hoping so much that you get a grandbaby soon ha! :) Keep dreaming, mate :) P.S. Your teeth are so nice! I wish I had nice, white teeth :)

Good news! My stepdaughter is pregnant (they couldn't be there for the shooting) So I am getting a grandbaby! :)

Compliments on my teeth, now there is a new one, lol. :)

Hi, thanks for doing the AMA. I recently watched a film called How To Die In Oregon, it's about the laws governing assisted suicide in the United States. I don't mean to sound to morbid, but if you have seen the film, how would you say it reflects public opinion among individuals with terminal cancer? Is it a common point of discussion or interest?

I did answer the question above, and I just don't think the state should be involved in private decisions. As for if I would do it or not, I don't think so. But my advanced directive says to give me medication to control my pain, even if it will shorten my life. That's as close as I have come to thinking about it. Maybe my mind will change but for now, I feel like I want nature to take its course.

I really don't have anything to ask. My mom had the same diagnosis as you (except add to the liver her spleen, spine, adrenal glands, and lung). I saw what she went through for 7 years with that diagnosis. she was not a herceptin candidate. i commend you for your fight, bravery, perserverance and wish you only peace during this. It's hard. really fucking hard.

I'm sorry for what your mother went through. Herceptin is a wonderful drug and it's next-gen drug, Perjeta, is the only thing that has slowed my cancer growth. I hope it works for a long time. If not, I have Kadcyla waiting in the wings (if my blood will recover enough to take it) and so it's nice to know that there are still meds out there for me. I'm sorry for what your mom went through but like I said, I think it's harder on the family members.

I like your sense of tumor.

ha!

I'm not against pink, but I'm not very pro pink either. All I want is for other types of cancer to be recognized. It seems the only one people know about is October= Breast Cancer. What about September= Childhood Cancer? Anyways you are amazing, keep it up!

I thought September was Teal - Ovarian Cancer? :)

I just think cause marketing needs to go. If we had to have it, just change October to "National Cancer Awareness Month" and let people sell their products with whatever ribbon color moves them.

But do we need cancer awareness? No.

My fiancée and I agree completely with your stance against the komen foundation and their "charity." I hate how they've turned "charity" into a business, and yet do very little. The things that irritate me the most about them are the lawsuits against other charities.

I'd love to hear what initially caused you to become anti-pink. For me it was the salary business with one of their ceos a few years back

It's funny, I named my blog "I hate pink" right away but it wasn't really because of the charitable aspect, which I didn't know much about. It was just the culture of breast cancer, the rah rah attitude about the disease that I didn't want to be part of and didn't like. It seemed like a club that I was forced to join that I didn't want to.

But the more I got into the world of cancer,, the more I learned. Now, I really, really hate pink. (But oddly, I do like the actual color still.) :)

And yes, their lawsuits are disgusting. Especially since Komen is in NO WAY about "the cure."

Don't have a question just wanted to let you know I think you're a total badass for fighting like you are. I hope you beat the odds. Thanks for advocating for research funding rather than awareness.

Thanks! If I have educated ONE person than it's worth it.

Curious as to your opinions of chemo therapy. I am a nurse in a chemo clinic at a va hospital. My wife thinks that the chemo is worse than the cancer and will refuse it if she gets cancer. That is her decision even if I disagree with it. I see good with chemo but I also see bad. Your thoughts please? Thank you very much for sharing your story.

I have done 7 different chemos now: carboplatin, taxotere, taxol, gemzar, navelbine, abraxane, halavan.

Without these chemos, I would be dead, and I'm not ready to be dead. Only one made me nauseated, and that was Gemzar, and it was controlled by an extra medication. Carboplatin made food taste like metal. The rest never did a thing and I never threw up on any of them. Taxotere/Taxol caused complete hair loss, Abraxane caused hair thinning. The rest did nothing to my hair. All of them made me tired but not so tired that I can't manage to do something important. I do need 12-13 hours of sleep. I have some achy bone pain from them but it's no worse than when you get a flu - actually, probably not as bad. I've kept my fingernails, I've had no mouth sores or skin problems. The only side effect I'm guaranteed is constipation and Senekot S is your friend. I haven't had neuropathy.

I have sat in the infusion room every Wednesday for four years, with lung cancer patients, colon patients, pancreas, breast, etc. Surprisingly, most of them are 20 years older than me or more. All of them are surprised at how easy chemo is compared to what they thought it would be. I see them come in, terrified, thinking they will be puking the next week, they'll be miserable like the movies and TV shows - and it just doesn't happen. It's kind of a let down - all this build-up to "CHEMO" and it's nothing like they imagine.

Chemo has a cumulative effect, so those first few rounds are easy, for some, you hardly even notice you have had anything. If you have six rounds, by round five you are pretty tired. But if you have to live on it, like I have, you just do it.

Tell your wife not to make any decisions before she needs to but that it is not what she is thinking. If she did get cancer, she would probably do well to go to a support group and meet others with her condition who are doing chemo - they can dispel her fears. But I hear a lot of people say they'd never do chemo - until they have to. They usually change their mind as they want to live.

Chemo is not worse than cancer, not by a long shot.

What are your favorite breast cancer research charities?

My favorite charity is StandUp2Cancer. They don't ONLY do breast cancer but they focus on five or so different cancers, one of which is breast cancer. Their goal is to get research to the patient as quickly as is possible.

I like Metavivor which focuses on funding research for metastatic breast cancer.

Every town has a small charity that helps patients with cancer - with direct support. So you'd have to find your own but I like those. They help patients who need rides, who need housecleaning, who need help with copays. If a charity goes to RESEARCH or DIRECT PATIENT SUPPORT, I am for it.

Cancer is a fucking dick, and breast cancer is one of the worst kinds. Too many women die from it every year. As a man who has done independent fundraisers for breast cancer, it hurts a lot to hear your story. My question is this: what advice would you give women to help avoid this horrible disease? I wish you all the best and I truly hope that you get to realize your dreams.

I don't believe it can be avoided, unfortunately. It's a crapshoot. I lived a very healthy lifestyle and here I am. I have family members who drank a liter of alcohol and smoked 2 packs of cigarettes their entire lives and lived until their 80s.

So what I would say is take care of your health because we all should, and appreciate it because you REALLY don't know what you have until it's gone. Eat right, drink moderately, exercise some - but enjoy yourself! Everything in moderation, right? Get your checkups, be aware of your body, if something is wrong, go see a doctor.

Other than that, just try to enjoy your life. You only get one and it shouldn't take a serious illness to realize that - but it often does. Every single day is beautiful and spend time noticing that.

Very right. My mom was vital, athletic, energetic, always on the go and full of zest for life.

She had a lumpectomy for breast cancer 12 years ago (they caught it very early) and was pronounced healthy.

She passed away in May from complications after a stroke caused by metastatic pancreatic cancer, an awful double whammy nobody even suspected. She was fine and making plans for the summer one day, in the hospital the next, and gone from this world only a month after the diagnosis.

I'm sorry for your loss. I think some our bodies just "like to make cancer." Nobody knows why. :(

Should I feel bad that I work for a company that teams up with Komen to sell pink products in our story every October?

You gotta eat.

But if you are on good terms with your manager, maybe some education is the way you can foster change. Even finding a charity that actually helps cancer patients is a start.

I hate to go dark considering everything, but what are you doing differently now that you know it's not curable? Have you changed the way you're living your life, doing all that stuff people say they want to do before they die, but don't?

And secondly, with the pink hatred. I'm with you there. My aunt, my mom's twin, died of ovarian cancer ten years ago on the 9th. We've been on a breast cancer awareness month hating spree because nobody cares about ovarian and the fact that most people don't find it until it's Stage IV makes it a hell of a lot scarier, I think. Not that breast cancer isn't, but irrationality comes with personal loss. Do you think that breast cancer awareness month brings awareness to other types, though? Would that be considered a "good" thing about being drowned in pink all month, or do most people just consider the boobs and not bother with all the other places it shows up?

The things I'm doing differently are only internal: appreciating my family more, enjoying my hummingbirds, sleeping with my cat, laughing with friends, sometimes crafting. I am sick, and I can't go travel or do marvellous adventures or bucket list items. I don't know why in the movies cancer patients never seem sick and get to chuck it all and go do stuff, but in real life, I sleep a LOT and I sit a LOT and I feel pain a LOT. But I'm just happier with my family and I appreciate life in a way I took for granted before.

I don't think breast cancer awareness month even educates people about breast cancer, much less about other cancers. How many people know there are types of breast cancer? How many people (who haven't had it in their family) think it's curable now? How many understand that they are finding disease that isn't cancer that has to be treated as if it were? How many understand overtreatment?

Much less know anything about other cancers. They don't.

Back when it started, it made sense. People were afraid to talk about breasts, women were embarrassed to get checks. That's long, long, long gone. Now I have 13 year old girls writing me terrifed that a lump in their budding breast is cancer - it's just WAY in the other direction.

So there is no point for awareness now, except that it is a marketing tool. Progresso puts a pink label on their soup so that you will pick their soup over a generic one, thinking "hey, at least there money goes towards something good" when in reality, they don't donate one penny more than they would have before. It's just branding, not educating.

A couple of years ago, I had a friend of mine do a guest post on my blog - she had Ovarian Cancer. (She has died now, like you said, people don't find that one early as the symptoms are too vague - bloating? ) and she said that it was hurtful to have all this attention on one kind of cancer. I can't argue with her.

If you could do anything you wanted, what would you do?

I would have gone on Survivor. I wanted to do that show from the first season, before I was diagnosed. But my son was 2 so I never sent in the audition tape. Now, I only could go if my oncologist wanted to go with me! :) I suppose hooking me up to an IV drip while at Tribal Council would be interesting TV.

Or, I could do the Amazing Race, which would have been fun but with my sense of direction, I'd have been kicked off lost the first leg. :)

I would also go visit Australia. Or, Tahiti, I do like my beaches and South Pacific Islands. I'm just happy I got to do Hawaii. If I ever have a period of feeling okay again and I know it'll last a few weeks (and I don't know how I could know that), I'll try to go there one more time.

No question, just want to give you an internet hug and a big thanks for doing this AMA! :)

Thank you! But I'm not bending over, lol. :)

I want to thank you for all your hard work but mainly in being brave enough to talk about cancer and hopefully help some women (and men) get themselves checked as early as possible. My wife found a lump early on and had a mastectomy at 33 year of age. It hadn't spread and she was pregnant at the time and could continue that because of no need for radiation or chemo. She is fine now 3 years on and we realise how lucky that was finding and getting it checked early. Thanks again for all you do

I'm so sorry, that must have been very frightening to have cancer and be pregnant at the same time. Glad it's worked out.

Hi and thanks for doing an AMA. You're inspiring.

So to the question. Did you change anything by your own choice in your daily life with your partner since you were diagnosed?

You'll leave your own part of the world in a better place than you received it.

I try to be less irritated by small things, but am not always successful. LOL. I'm still married, still a human and people who live together still can annoy each other.

I don't think having a disease gives you any great powers to not be anything that you weren't before. In fact, when you are in pain and tired and don't feel good you might be a bit more snarky than you want to be.

On the flip side, I do try to let him know how much I appreciate the sacrifices he's had to make. He's been put in a bad place and not only that, he has had to take over the things I used to do - I can't work, I can't cook much, I can't clean - so I do appreciate that he is doing those things for me, very much. He's got a big burden. It's not only my dreams gone - his are too. No, we won't be retiring and moving to wherever, we won't walk hand in hand in the sunset, none of that. He'll be alone.

Hopefully, he'll find somebody else. I do mean that too.

I lost my sister just over a year ago to the same thing. She was 33 with a 2 year old so the whole thing was awful but she too sometimes saw the lighter side of things. It was a very dark cloud for a couple years but now that she is gone I have found some silver linings. Please don't worry about the ones you are leaving behind; they will all be fine and dare I say stronger than ever. We all go sometime just some of us get to know when and some of us don't. Please know that I will continue spreading the word that we have achieved the 'pink' goal a long time ago and now it is time that we cure this thing.

I'm glad you and your family are doing well. I have faith they will too - life goes on. It's still sad that they have to be without me. I would have been a wonderful grandmother!

Good to know that people are going to work on the pink thing, it definitely needs to be changed.