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?

Friday, April 8, 2016

New Video - What do People Think it's Like to Have Cancer?


Hope you got some of the video jokes.  :)  Subscribe to my youtube channel!  And no, I haven't forgotten this is still a written blog, I have an important post I'm working on.

Monday, March 28, 2016

Chemo Infusion Room Etiquette - Mets Monday Video

Enjoy the latest video.  I'm having fun making these.  I have several ideas for future ones (and yes, son, I will try to speed them up a little).  Feel free to post suggestions for any you'd like to see below. (Don't worry, I'll still be writing as well.)

Please subscribe to me on YouTube. You will get notice when my videos are up, and when I get to 500 subscribers I can pick my own name instead of having a bunch of numbers on the address bar.

I also want to thank all of you whom are using my blog as your jump off point for Amazon shopping. It is the only money I make for writing the blog and it really helps me to have a few dollars in the Amazon account for free spending.  







Tuesday, March 15, 2016

Video: You could get hit by a BUS!

I am having fun and keeping myself busy (very important for somebody with metastatic breast cancer) by learning to make videos.  I am trying to keep to a schedule and upload one every Monday, aka Mets Monday.  If I don't give myself a deadline, I don't do things.

They are silly and unprofessional, but I am just learning.  It's slightly irritating that I'm struggling to figure out how to make something that my kid, and pretty much every kid, knows how to do instinctually by age 9.  How do these young people just know this stuff, anyway?  My son once created a stop-motion video of a puzzle game putting itself together, and he did it quickly and perfectly - pretty much the first time he ever made a video.  He just shrugged when I was amazed.  It would take me weeks to figure that out, and I can't even blame chemo-brain here.  As much as I want to blame every mental mistake or bit of slowness on chemo-brain, there are times I have to admit that I'm just suffering from being in my 50s.  Now my child is off in college and is waaaay too busy to teach me how to use this software, so I hobble along on slow, misfiring synapses.

Ancient mom brain aside, the videos should get better as time goes by, assuming I stay interested (and stay healthy and alive). As you may have guessed by now, (because I've told you) I am very ADD and jump from interest to interest as health allows.  I like to learn new things.  I like to help people understand what it is like to live with cancer.  So my goal here is not to become YouTube famous (yes, that is a real thing, and if you start watching, there is a lot of drama among the big players, just like watching Real Housewives).  My goal is is to reach cancer patients and their friends and families in a visual way rather than in writing.  Sadly, not everybody reads. So if you think somebody needs to hear this, feel free to hit that share button.

Please subscribe to my YouTube channel so you can be notified when I upload a new one.  I don't post them all here.










Monday, February 29, 2016

Mets Monday - How NOT to visit a sick friend

This month, I have been fortunate enough to have had visits from my oldest dearest friend, as well as my sister. Many of you canceristas and metsters are lucky enough to have loved ones who visit.

But tell me, do they always behave the way the way you wish they would? Of course their intentions might be good, but their thoughtlessness sometimes shows.

Insensitive behavior happens most often when we don't appear sick. When we look normal, people forget our illness, especially those of us with cancer, which so many equate with hair loss.  If you aren't bedridden and bald, you can't be unwell, right?

Wrong.

Sick, even real, debilitating sick, can be quiet, invisible and subtle.

In coming up with a way to keep my vivacious friend busy and do an activity together, I came up with this video.  Not only was it a fun activity for friends to do, it will hopefully remind those who visit a chronically ill person what to remember during their time together.  No matter the illness, the best way to be supportive is to take your cue from the sick person, and don't put pressure on them ...about anything.

There are many more "what not to do" items that we missed, and we wanted the video short, so please feel free to add your peeve in the comments, or on facebook.

As you can see, we both missed our calling as actors.  I really do think a designer should consider sending me an Oscar-worthy dress, shoes and jewelry, don't you?


Enjoy our silliness!