Monday, September 26, 2016

Writing to Heal

LBBC is beginning a campaign to remind people not to forget those of us who are living with metastatic cancer and are spending some time this week teaching people about mets.  They specifically asked me to write a post about using writing as a form of healing.  And of course, what I learned is that writing is only part of the healing, it is the community you get from writing that does the actually healing.

When I first began this blog, nearly 7 years ago, I had no lofty goals other than documenting this weird part of my life, which I was sure would last a year and then be a memory.  I didn't dream of fame, or changing the world of cancer,  or being somebody that people looked to in hope; in fact, I never thought anybody who wasn't related to me would read this.   My sole purpose was to keep my family off my back.  Like all newbies to cancer, I pictured myself spending the next four months lying in a darkened room, sick,  puking and most importantly, sleeping.   I imagined concerned family members calling me mid-barf or worse, mid-dream to ask how I was, and me repeating the same thing over and over, "I'm fine.  No really, I'm good."  

My brain said, "No.  Hell no."  


Of course, realistically, they needed to know what was going on with me, so I decided to share how I was doing and put it in one accessible place.  The doctor said, "I'm sorry to tell you, but I'm pretty certain you have cancer." and my first thought was "a blog!"   THIS blog.  I'd blogged before, and even gotten into trouble for it, and had been looking for new material.  Cancer, what luck, the perfect subject.   I wanted a "no excuses" place with an easy to remember name, where anybody could find it when they wanted to check in. I also decided, quite deliberately, that I would write it humorously; first, so nobody would worry and second, so that anybody who wanted to call would rather read here and get a laugh then dial the phone and hear my grouchy voice.

That was a bad idea, by the way, just in case you feel like you want to walk my path.  People called anyway, even if just to tell me they liked me most recent post.  Fortunately, as it turned out, my cancer imagination was worse than reality. Back in those early days of my first chemos, I was healthy enough to talk on the phone and certainly happy to.  I didn't sleep or puke as I thought I would;  in fact, I felt pretty normal.  I felt bald, is how I felt, which is a lot different from feeling sick, which is how I feel now, even with all my glorious hair.

You can go back and read the beginning and see if I'm remembering right.


I did not puke until sometime around year 4, when Gemzar got me.  I had no idea that when I started writing, of course, I'd still be blogging about cancer years later, or for that matter, that I would be doing chemo for the rest of my life.  Yet the words "Metastatic" became part of my world about 5 months after treatment ended.  By the time of my first puke, my parents had both died, my brother had stopped talking to me, I was no longer working,  and many people in my real life had forgotten I was even sick and many had disappeared.  But I'd picked up a following online who guided me through all my challenges, from c-diff to gamma knife to even the many boring healthy periods.  I don't think the value in having people know what you have gone through - or even just being willing to listen - can be overstated. That impulse to write the blog was truly one of the best things that came out of the diagnosis.

People stuck with me and this blog, even though some of the humor had left my spirit and the tone of this blog changed to become more introspective.  That is inevitable when you are coming to terms with your mortality.   I still get some humor in now and then, but after 7 years, I find that everything is repetitive.  How often can you write about the same thing and keep it fresh?  Another PET?  My 40th?  Another chemo infusion?  My 300th?   It's impossible.  Chemo, unimaginable to me 7 years ago, has just become routine, like getting my hair blown out.   I have periods of intense pain and illness, and even more periods of seeming health.  I find it hard to write about both - I don't want to turn this blog into a litany of "what hurts today" and I also don't want it full of trivialities.

The blogosphere has changed since I began, as is the nature of the internet.  People have less interest in reading now, and are more interested in shorter pieces of information or video.  I migrated over to facebook early, which was one of the best things I've done.  Now, I have a page where I can give out information not "worthy" of this blog (not meaning it's any less important, just that I can't think of a thousand words to go with it).  The blog and facebook (and twitter, to a lesser extent) are complementary, each having their own place.  I use Instagram to document my life visually, which mostly shows how little I do.  Head on over if you want to see a hundred pictures of my dog sleeping.    However, with these tools, I am able to stay in touch with anybody who wants to know about me; whether it is how I feel about a certain issue in the World of Cancer to what my kids have been up to.  And there is give and take, which seems a little easier on facebook than on a blog.

Blogging is for writers.  Facebook is for communicators.  Both are for friends, of which I've made many.

Some consider me an advocate for metastatic cancer patients, which is why LBBC asked me to write this, I suppose.  I don't put that name on myself.  Yes, I am very committed to the idea that awareness is an anachronism, and we must move forward from that idea. I think the article I wrote 2 years ago about moving on from awareness to research still is powerful and necessary and should be shared through October.    

I've lived that truth.  I could be a wealthy woman now if I took money and products from all the awareness groups that asked to use my space to get their word out, but I decided early on, before I really understood the implications, that wasn't the route I was going, and I would have to truly believe in it as a helpful product for cancer patients before I'd mention it.

And, as I have gotten deeper into the world of metastatic cancer, as I have learned more about how cancer behaves, I'm more sure than ever that the concept of awareness has been a huge error in focus, and I sit in despair that it will ever be corrected.  I sometimes think - what if we had gotten it right 30 years ago, and we had understood that finding cancer early didn't cure it, and instead, put all that money collected in the name of awareness into research instead?  Where would we be now?  Still, I don't dwell.   I have hope that in spite of the assault of Pink October, we will still make progress in moving towards a cure for metastatic breast cancer. One of those charities trying to change focus is LBBC (Living Beyond Breast Cancer.)  Despite their unfortunate name and residual awareness focus, they are very actively reaching out to the metastatic cancer advocates and listening, which is a good thing.  I am still conflicted by them but at least they are trying, unlike Komen, who does not reach out to metsters at all.

My continued survival is proof that we are on the right track.  So as an advocate goes, I've said my piece, and I stick to my convictions, but I let the words I've said stand for themselves and move on.  Life, as I have learned, is too short to get angry.  As I said before, I don't really care for repetition.

Don't laugh, but I see myself as more of a beacon of hope for those newly diagnosed with mets.  When I first heard the words, "your cancer has spread to your liver" living five years seemed impossible, and I was sure I'd be gone by now.  I mean, I was absolutely certain I would be gone.  And I'd been sick enough at times for that to be true, but the body has an amazing power within it, Instead, life stretches before me as it always has, with some faltering along the way.  Even with my last metastatic relapse, which sent cancer through my abdomen and spotting into my lungs, I felt hope and sure enough, three months later I was in full remission again.  I'm on my 8th or 9th chemo, I honestly can no longer remember - but even being "heavily pretreated" (in cancer-speak, that means you have less chance of next treatment being successful)  it worked well.

I get letters and contacts from women newly diagnosed and the one question they have is "how do you manage."  I tell them to the best of my ability how to survive mentally.   I feel that my main purpose is to give people hope that they will be like me, that they can be like me.  I was just past 50 when diagnosed, with a 12 year old who still needed raising.  Now I'm 58, that kid is in college, and I really think I could live another 12 years and die at a respectable age.  I think a lot of us can do that now.  (I'm not saying that 70 isn't too young to die, because where I stand now, it certainly is. I have a good friend who is 72, looks 52, and is a world traveler, with her last trip to Africa behind her and her next trip planned to Patagonia.  But after living with cancer for a decade or more, your perspective changes.)
Aside from being a "not dead yet" role model, I also feel like I get to be a teacher.  I want people to question what they hear, especially in the world of cancer. I raised a kid smart enough to go to Caltech, after all, that should give me some science cred.   Numbers are twisted, on all sides of the equations.  People don't understand statistics, and so I have explained:   The 1-8 number is misused.    The 30% will get mets is not accurate, we don't in fact know that number; it's not tracked that way.   I've explained what loss of appetite from advance cancer is really like, helping many learn not to force their sick loved one to eat.  So I can use this blog to teach people to be skeptical, especially when marketing and big money is involved.

Helping others has been motivating, but writing has been a form of healing for me, more than I ever would have guessed.  The blogger community has been amazing and supportive and comforting but the larger ePatient community moreso, those on twitter, those on facebook, those on YouTube even and those living with different diseases who have shared with me too.  I believe without the readers and followers I have, I may not be as healthy as I am now.  The women who read and find hope through my story, also give me hope.  They give me the ability to relive what I've been through and to say, "If I can do this hard and terrifying thing, you can too."   When it turned out my body would not be healed, I discovered my spirit could be - by you who read me and comment.  Thank you.

#Stage4Lifer



Barring unforeseen circumstances, I will be writing this month of October.  I will be posting things on facebook too, so please like my page there and join up.  If you don't understand why many metastatic cancer patients do not find comfort in pink October, instead we find it angering, like my page and wait for October.  I think you'll soon understand.

Sunday, September 4, 2016

Dead iPhone


Did you think I was sick or dead?  Who could blame you - it has been a long time since I've written. I'm not even sure where I left you in this grand saga of life, death, and daily trivialities.

I'm here but my iPhone has died. I've had an iPhone since they first came out in 2007, before diagnosis,  and I've faithfully bought one every 2 years.  I have been transferring everything over with each new purchase.  And, my 6+ died, data gone, pictures gone, memories gone.

I'm still here, without my electronic helper.  I do remember having a PET scan sometime this spring, which came out clean. NED, nada, no cancer.  Lightening luck struck again.

It was last October 2015 that cancer had exploded through my system: abdomen, liver, many lymph nodes; it even creeped into my lungs.  I thought my final destiny had arrived.  I was calm at the thought of relapse, not freaked out or upset.  My stomach dropped, and I knew what was coming, but I felt like I could have good luck again, which I did.   Kadcyla entered and cleaned up the cancer like an OCD person cleans his hands.  Scrubbed raw, no visible cells left.

Six months later, when what is now chronic pain intensified, yanking my intestines and kicking my ribs like a petulant child, I knew it was cancer returning and the Kadcyla giving up.  Hence the springtime PET, which by the way, I had to fight the insurance company to get.   I not only thought it was cancer returning - I was absolutely certain. I actually told people cancer was back, before I knew it was.  I had no doubts at all, and started doing my planning again, refreshing my death papers, rewriting passwords, etc.  I finally got the scan approval.

The PET showed I was clean.

I was shocked.  I still had the mystery of the pain, which caused emotions I'm not proud of.  Like frustration and anger.  Yes, I was actually angry that I did not have cancer.  I was mad that I didn't know what was going on with my body. I was embarrassed that I fought for a test that I didn't need.  I was petulant when I told my doctor, "Since I don't know when pain is cancer or nothing, I'm not even mentioning it anymore."  He gently said, "You have to."

I know it sounds crazy, to be mad at good news.  I couldn't admit it to anyone,  and I couldn't figure it out for myself.  Given time, all I can come up with to explain this fury is when you wait for something for years, when you know what your fate is supposed to be and you believe now is the time -  you can feel upset to discover you are wrong.  Even when it's something horrible like cancer spreading.  

I also questioned my entire place in the cancer community.  Am I even a cancer patient anymore, really?  I go in for chemo every three weeks, like a cancer patient.  I have pain like a cancer patient. I have a port, I have fatigue, I have nausea and constipation.  I am on my 9th chemo regimen.  Look at all I've been through.  But I don't have cancer now.  I look healthy, I have more energy than ever.  I have been NED almost as long as I've had cancer.  So, where do I fit in now?  I'm healthy AND sick?

What if I'm on the leading edge of people who survive metastatic breast cancer, thanks to immunotherapy? Doctors now say it is becoming a chronic disease, and perhaps that is so in my case.  I was close to death, more than once.  I never want cancer again, of course. And yet, in a strange way, my identity has become tied up with this disease, and in waiting to die. What if now I have something controllable, and its no longer a certain death?

Who am I then?

I felt angry:  for not having a "place" anymore, for not being able to read my body, for not even being certain I did have a terminal illness anymore, for all of it.   I was so angry - and so unable to explain it - I stopped blogging, stopped posting on facebook, stopped reading emails, stopped thinking.

I settled back to my life. The anger dissipated and I started to understand my feelings more.  The pain lessened too, the meds worked better.  So, I did household chores:  I cleaned an organized my craft room.  I painted and regrouted a bathroom, and painted and scrubbed the kitchen, things I've not been able to do for half a decade.   I now have weekly hair blow-outs, even though I am still mostly at home. I get a monthly "art box" where I get a project to do.  I turned my back on cancer, as much as I could.

But I needed to find a way to feel useful.  I also need to make some money, so I am now crafting items to sell.   This is complicated:  I have to spend the money (a lot of money) to make the items, then once I get enough I have to figure out exactly how to sell them so it doesn't cost me too much or I can even make a profit (which looks less likely each day).  Margins are already thin.  But it is an interesting problem. (No, I don't want to do Etsy or eBay - paypal takes enough!).

I have written out a schedule of things I want to do, including some writing. I've had a booklet planned for years, designed to sell that I've never sat down to write.  I also need more household things done - porches cleaned, flowers planted, weeding.  I am trying to be productive, as if I had just retired early and wanted to be home instead of working.

October is coming and there are editorials to write.   I am trying to get my chemo-addled brain functioning - I do a puzzle every day.  I'm trying to get up at a more reasonable time.  I am trying to remake a life that I'd previously given to disease.  I still live for today, and appreciate each beautiful thing that happens.  But now, I think about the future just as you healthy people do.  I have made reservations to take my son and his wife to Vegas for his 30th birthday.  I wonder who will speak at my younger son's graduation in 2 years.  I am happy to hear that my older son and his wife will try for children in a year or so, and I even freaked out thinking that their child may not be in the elementary school down the street, so I can pick her up at 3:00.  I am thinking that if we have money left when my son graduates college, my husband and I will take a trip somewhere we've never been. Maybe Europe.  Maybe Australia.  Maybe Bali.

I again worry that my husband, who is 11 years older than I am, will die first.

Normal.  I'm not angry now, I have accepted my place, once again.

I wonder though - if Kadcyla stops working and cancer comes back, how will I feel?  How many feet into normality do I step?

As I said above, my iPhone died, it just completely bricked. I couldn't get anything off of it before it went, and the genius bar people couldn't help me. I lost almost 8,000 photos, and all my contacts, my blog ideas, daily reminders. 9 years of my life gone.

So I have a choice:  I can mourn what is in the past, what is lost, and maybe be angry that what I thought would happen did not.   Or I can acknowledge it, take a deep breath, and start fresh.

Five years with mets, and I'm starting fresh.













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Thank you to those of you who use the Amazon box to the right to start your shopping.  It helps me greatly.  If you don't know, just start your search for anything on Amazon on my page and I get a small percentage of what your purchase.





Tuesday, July 5, 2016

Dr. Katherine Albrecht Radio Show

Did you miss me in the Dr. Katherine Albrecht radio show today?

I'm not surprised if you did, since I didn't post the info.  I'm been going through a lot these days and am struggling with posting. (No bad news though, nothing to worry about.)

Dr. Albrecht is a metster!  She has brain mets and is recovering from a 2015 surgery.  It was fantastic talking to somebody who totally gets what this disease means.

It isn't too late to listen - here's how:

* "On demand" 24-hour listen line: 605-562-4053
    Show can be heard live, then looping until it is replaced by the next show

* Live and delayed broadcast to over 40 national radio affiliates - if you have Tune-In Radio, just search for Katherine Albrecht and you can find years of her shows.  The date for me is July 5th.
 
* On-demand web link:
http://gcnlive.com/JW1D/index.php/onair?type=onDem&show=24
Show is available until replaced by the next show

*  Available as an MP3 audio file:
Archive descriptions and MP3 audio are posted on my website each evening
http://www.KatherineAlbrecht.com (From the "Radio Show" menu, click  "Show Archives")


I have to say, sad as the circumstances are, it's nice to have somebody in the media who understands metastatic breast cancer.  All we ever hear are the media personalities who have a brush with an early stage cancer and then thank mammograms for saving their lives.

Now we have one who knows that for some of us, a mammogram is only one step on a long, long road.

Tuesday, June 7, 2016

Live for Joy


I have been truly blessed.  Back when I was first diagnosed, five years ago, June 15, 2011, I set a goal.  I wanted to see my youngest, then 14,  graduate from high school.  In my mind, that event put a period on the job I was supposed to do - raise my kids.  

Setting a goal a few years in the future when living with metastatic cancer is playing with fire, of course.  This disease will take you when it wants to take you, we don't get to choose. We have that Sword of Damocles hanging over our head, but being able to look forward to an event helped me focus my eyes forward rather than up. 

That high school graduation was an event that would have made me happy and proud without having cancer, but having cancer, it brought me true joy, and a sense of relief and accomplishment.  I did it, I raised my son.  He was prepared for college, he was able to live on his own if necessary.  Whew.  I don't take credit for his intelligence, drive, grades or anything but his ability to survive without me. He can cook, do laundry, is able to interview, find a job, understands paying the bills.   He doesn't need me at all, which is the goal in raising your kids (slightly heartbreaking, but it is the point of being a parent).

I got to see that period on the end of his childhood.  And then, my luck continued.  I have gotten so much more than I ever hoped for.  In the past five years, my stepdaughter became pregnant, gave birth to my first grandson who is an insanely beautiful, blue-eyed, blonde, curly-haired boy who is now two.  And, of course, he is a genius, speaking in full sentences, fully potty-trained - and he knows his Grandma Ann. We had a crayon sword-fight at the wedding.  He is unlikely to remember me unless I live much longer than anybody expects, but somewhere in his brain, I live.  Joy.

Wait, what wedding, you ask?  This weekend, on a glorious bright blue day up in the Sierra Nevada, my oldest son married his love of eleven years.  The wedding was a reflection of this couple, simple and classic, funny and sweet, creative and imaginative.  Watching your son vow to love his woman forever is heart-melting.   This little boy that you read stories to, kissed boo-boos for,  cooked dinner for every night, this boy whose hair you cut and clothes you bought and who you taught manners and hugged every chance you got - the fact that he is able to give his heart completely and honestly to somebody else,  that, my friends, is pure joy. It doesn't hurt that I love his wife like I love my stepdaughters.  

At the wedding, people asked me what my next goal is.  Many are under the impression that setting goals to live for is what keeps me going.  In reality I stopped thinking that way after the graduation.  I am not asking for more, in any sense except that I'm going to keep going with the treatment and the appointments and the unending cancer lifestyle.  I'm not giving up, but I am not going to focus on the future.  My next big event is my son's college graduation in two years. I hope to be there, of course, I do - but big events are part of life.  There will always be one in the future, and the time will come when I will no longer be there, as happens to us all.  At this point, I'm satisfied with the day I am in.

Our regular days can bring plenty of joy if we look for it.  A bird nesting outside on your eve, a rainstorm, a dog chasing its tail.  The big events bring true joy but the little things make life happy. I've had plenty of both.

So my advice for you newly diagnosed metsters is, as it has always been, to take each day as it comes.  You indeed have a sword hanging over your head, but don't give it power.  It will drop one day, or maybe, just maybe, you will be in the lucky 2% and it never does.  I just know that staring at it above all the time means you miss the joy below.




Bride and Dad


Here Comes the Bride

Groom and Bride

Dancing

Me chatting with relatives


Me, my cousin, my sister, my husband at rehearsal dinner


Me and my husband




Moms! 


After the Ceremony





Tuesday, April 26, 2016

Get Ann on the Walking Dead

#getannonthewalkingdead

I love the zombie apocolypse TV show The Walking Dead.  I could get into how richly drawn this world is, how the characters struggle with good/evil in a changed world, how Carol and Darryl are super bad asses and then suddenly show their sensitive side.  But I'm not writing a television blog, I'm writing a blog about living with metastatic cancer.

So I can't relate to Carol,or Rick, or Darryl.  I relate to the actual Walking Dead, aka the Zombies.

Why shouldn't I?

My life, indeed, is much like those of the Walking Dead.  I'm wandering around in this purgatory, between life and death,  looking for sustenance wherever I can find it.  I can't think of a future nor focus on my past.  My life has to exist in this very moment.  And I make weird noises when I'm hungry too.

As a metastatic woman, we are often considered the untouchables.  The zombies to be feared  - we got the disease that nobody wants.   And so I relate to my zombie friends on the show, who no longer have any motivation but to eat brains.

Okay, I really cannot take these metaphors any further.  I just think it would be totally cool to be a Walker on the Walking Dead.   I set bucket list items long ago when first found out I was incurable, and then got too busy trying to survive to worry about any of it.  But now, nearly five years later, I'm doing okay.  Being on the set of a TV show was on the original list.  I don't have a lot of interest in the acting side but I do have a lot of fascination with the technical side of what happens to make a TV show come together.  It would be very cool to be on the set of the Walking Dead, and get to be a zombie and see how they film a show.

I have a friend who lives in Georgia so maybe I could visit her, and I could maybe do a go fund me to pay for the trip out there.

So, in June, I will have survived 5 years with metastatic cancer.  Let's get me on the Walking Dead.

My husband says, "Do you think you can travel?"  And I say, "I'm not sure."  Because I haven't had to go anywhere.  I have avoided all elective travel because I don't do time change very well.  But hey, some things are worth it.

If one of the true walking dead could be on an episode of the Walking Dead, that would be epic.  So share this, tweet it, repost it - lets get it out there into the world, and lets get this not dead yet lady on the Walking Dead.


Sunday, April 24, 2016

CURE Online

I will be doing a little writing for Cure Magazine's online version.  I'd promised to do this long ago but got sick.  Now I'm back at it, and not feeling that well again.  I remind myself, correlation does not equal causation meaning, just because I agreed to do it before and got sick, doesn't mean it will happen again. I just need to get out of the house a bit more, I think.  I was supposed to start volunteering at my old school but Open House is coming and they had to cancel; she doesn't have time to teach me what to do.  So, my chance to get out is gone.   I spend far too much time sitting around doing not much these days and to be honest, I'm getting a bit depressed about it.

For CURE, my goal is to write about breast cancer, mostly from the metastatic perspective, but having been Stage 2, I will also touch on things of concern to early stage women as well.  If you have a topic you'd like to see me tackle, feel free to suggest it in the comments below.

Here is my latest piece, if you have not seen it:


I also did a video interview with Dr. Rob Rutledge, a radiation oncologist, for their group, Healing and Cancer Foundation. The sound is sometimes rough on my end but it doesn't last all the way through so see if you can struggle through the bad parts.

The organization is located in Canada and do good work, if you can I suggest you look into them. Not many people focus on teaching people to get back to health, and I see it as being very necessary for breast cancer patients.

If you are wondering why I haven't done more videos, it's because YouTube says I cannot monetize them.  The thinking is my topic is too depressing.  It doesn't seem to matter that they are humor videos, I guess cancer can never be funny.    Yes, another rejection in CancerLand.  I wasn't expecting to make any money with them anyway, but being told I cannot has affected my desire to complete them.  But I will get back into it, there are many more reasons to do it.  It was just another demoralizing thought.

I want to once again say thank you to all those who start your Amazon shopping sessions from my blog.  I get a little cash in my Amazon account every month and it's nice to buy a treat or gift and not worry about spending the money.  I got enough to buy a cheap clothing steamer last month - I hate ironing.  Even though I rarely leave the house, it's nice not to be wrinkled when I do.  For those who don't know - as an amazon affiliate,  if you start a search for a product using the Amazon search box on this blog, anything you put in your cart and check out during that session will credit me a small percentage.    So again, thank you.

I also want to thank you for all your support.  It has truly been amazing.

Until next time.....





Friday, April 22, 2016

Rejection

I belong to a neighborhood forum, or I did.  You may belong to one too.  People share safety concerns, stranger sightings, carnivals, and items for sale in the neighborhood.  Sometimes a neighbor asks for personal help.

I rarely log in, but for some reason the other day I did, and I saw that a woman who lives nearby had been diagnosed with an early stage cancer and wanted to hear from neighbors who had survived cancer.

She was getting a lot of bad advice from people who hadn’t even had cancer.  Still, I hesitated in responding despite meeting her qualifications of “survival”.  I am aware that being metastatic has frightening connotations for many in the breast cancer world, and that some tend to be nervous about us.  However, she did say she wanted advice on chemo and hair loss, and after 6 ½ years of living with cancer, I know I am eminently qualified to give that kind of advice.  More than that, I was willing to be a friend.

So, tentatively, I offered my services, disclosing immediately that I was Stage 4.  I collect vintage scarves, so in my post I offered her some and told her I’d teach her how to tie them.  I have numerous books that people have given me to review, not to mention the ones I bought myself, which I also offered.  I added that I didn’t want to push myself on her, so if she was interested she could PM me.

She did.  I was quite pleased.  We exchanged numbers and sent several texts back and forth, setting the upcoming Saturday to meet.  I spent the rest of the day going through my closet, finding scarves in the colors she said she liked, pulling out wig holders that I am not using, and cleaning up a charm bracelet that had been given to me when I was first diagnosed - one that had been passed like a baton down through many breast cancer survivors for luck.  I’d been hanging on to that bracelet, waiting to find a person to give it to personally.   I pulled all the cancer books that had helped me from the shelves, and found a casserole recipe to bring her a meal, found some coloring books and started making her earrings  - every bald chick needs earrings!

While I have been able to provide support online through this blog and my facebook page, and I have met some wonderful women living with metastatic cancer, I had not met anybody newly diagnosed in person – at least, outside the infusion center.   So, I was happy to be able support somebody I could actually look at in the eye.  I even wondered if she’d be curious about my mastectomy scars, and figured I’d wear a button-down shirt in case she wanted to see. I kept thinking back on what I’d wanted to know, and what I needed back in those early days.  In the meantime, on that neighborhood forum, people were still discussing cancer, and so I posted my Soul Pancake video, showing how people can live a long time, which I've been told is inspirational.

Apparently not.

Later, I logged in the neighborhood conversation again, only to read a public message, “Ann, I do not want to hear a Stage 2 to Stage 4 story” and a terse cancellation of our plans with the generous concession that maybe we could meet after it was “all over.”   Which it will be for her, but will not be for me.

Despite having texted privately, she chose to announce her decision to rebuff me to all of my neighbors.  I’m now left with a box full of goodies and a sick feeling of public rejection, and the humiliation of knowing the stage of my disease meant I was not worthy of helping.  I was too frightening.

I swiftly apologized, and offered to mail her the scarves, but I heard nothing else.

I share this story because it is not unusual in the world of breast cancer. Many women with metastatic disease report being ignored from those who are newly diagnosed.  Those of us who are Stage IV are not looked at as inspiring in this culture of survival.  The fact that we can go for years, sometimes decades, having treatments but still raising kids, getting out every day, smiling and laughing and sometimes even working is not cause for celebration. All many can see is the end of our story, not the fact that we are still living.

We are zombies to these people; the walking dead.

This is not my first experience with exclusion – my own brother stopped talking to me after I was diagnosed.  The reason, I heard through my sister, is he supposedly cannot “handle it.” (He’s been not handling it for 5 years now.)   I’m hardly alone in being rejected because of my disease – stories have flooded in of relatives so afraid of grieving that they cut off the cancer patient long before their time, of friends suddenly disappearing and not taking calls.   I have heard stories from Stage IV women being told by social workers that they cannot attend a support group as they will frighten the early stage women.  A friend of mine described a time when she was sitting on a couch with another breast cancer patient, and as soon as her stage was mentioned, the woman got up and moved to the end of the couch, as if she were contagious.  

This cruel behavior is sometimes written off as shock at being diagnosed, but that is merely an excuse for bad behavior. The truth is, cancer does not make for a better person, it makes one become deeper into who they already are.  If they are self-centered, they will become more so; now they have an excuse.  We shouldn't allow them to justify it though.

We can feel all alone and frightened in this disease, it's true.  When we are shunned by our own – by the supposed sisterhood of cancer patients, it’s particularly troubling.  Being told we aren’t worthy is one of the more difficult pills to swallow – in a lifetime of pill taking.

Why does this happen so often?  Those of us who are metastatic don’t fit into the pink narrative as promoted by major charities and which has become part of our culture.   The story is that you get breast cancer, you “fight” it, and then you survive, hopefully to run races and make some money for the cause.  We are supposed to be “living beyond” breast cancer, and run for the cure and be warriors in pink.  We are not supposed to be in chemo for yearss.  We metastatic patients are the losers.  The entire pink world is set up so that the heroes of this story are the ones who were never in danger. Those of us who actually face death are often treated as pariahs and as outsiders - we haven't toed the pink line.

What the newly diagnosed don’t understand is you cannot get through this disease without the help of women who have been there, and that support can come from many places.  Few have been through as much as the woman who has done 300 rounds of chemo.   We metsters should be honored instead of turned away. Let me ask you - who needs help more than we do - and yet we still offer.

No matter the stage of our cancer, we all want nothing more than our suffering to mean something.  We want our lives to have a purpose.  When we have the energy, desire, ability and chance to help – being rejected may be the most painful slap one can experience.

To the newly diagnosed woman out there, let me say that most of us who are metastatic understand your fear of relapse.  The number batted around is that 90% of women who are currently Stage 4 were diagnosed at an early stage. If true, (and it is for me) that means nobody is truly safe.  Someday, you may look in the mirror and see Stage 4.  Someday, you may feel the rejection you inflicted on somebody else.

What will you do then?