"Take a breath.....Hold it.....Breathe Out...."

You all probably recognize the title as what a CT machine says to you  in a sing-song way when you are laying there on the scanner, warmth wearing off the blankets,  curly cue cord of the IV in your arm ready for contrast to be pushed into you remotely.

I finally got frustrated at my endless night of sleep, listened to my family, and called my doctor a few days ago, telling him I was not able to wake up.  When I made the call, I had gotten out of bed, struggled to the dining table, and was breathless, which his wonderful assistant could hear over the phone.  I told her my big problem was fatigue but she seemed concerned about the breathlessness and hey, at the time, I was really breathless, she was right.  My body had been in bed for more than a week straight, moving and talking on the phone was a struggle, and I had to pause between every word to get air.

Naturally,  they called me into the oncology office to get my blood checked.  Anemia made the most sense. Getting there was a hard task with my exhaustion, particularly getting dressed. Fortunately, my son has not started his new job yet and was able to drive me.   I was afraid I couldn't stay awake on the road, and I felt too weak to drive myself.  When my blood came back as being non-anemic, even in the ranges of you normal people, the doctor scratched his head and sent me off for a chest X-Ray.

Okay, he wasn't actually there so I didn't see him scratch, I'm just assuming.

That X-Ray also came out normal.

I was willing to leave it there. I'm feeling a bit better, awake more; I was up for hours yesterday, and although I have been availing myself of ritalin - it is working unlike before.  I got up at a normal time today, much to my cat's dismay. I'm still lacking in energy in an extreme way, and I feel weak,  but am not sleeping all day. Then his assistant called and left a message, saying the doctor wanted a scan.

In my head, I was thinking maybe a PET so I was okay with that.  To be honest, if anything is wrong with me cancer-wise, it seems like it would be my brain going wonky and wanting to sleep, and I thought maybe a PET would show brain mets.  I was not thinking lung, and I still am not.

But just now, I got the call for the appointment and it is for a chest CT.  With contrast.

This makes maybe my 50th scan and that is not an exaggeration, nor an exact count.  It could even be more considering all the surgeries, radiation, etc, that I've had them for.

I am just not sure I can do another one.  I just ..... can't. They aren't scary or hurtful and they don't make me nervous or anything.  But I'm tired of this.  I'm sick of being in machines.  I'm sick of having to dress, get in the car, go wait in a waiting room, change, get on a machine, little poke, take a breath, hold it, breathe out, okay, here comes the contrast you might feel warmth down there, breathe in hold it breathe out, okay you are done, drink lots of water and no caffeine, get dressed, drive back home........how many times is one woman expected to do this?

Maybe cancer has moved into my lungs.  Or brain.  Maybe I just had some virus.  I'm getting up again, still tired but not sleeping all day.  Maybe it was just a "thing."  Maybe, imaginatively, my body is practicing to die, maybe, practically, the infusions are affecting me, maybe ....maybe.... I don't know.  But I do know that whatever it is, I cannot do one. more. test.  The doctor hasn't seen me.   I am tired of being doctored by machine.   I don't want to do this and I feel like a 3 year old stamping her feet.  I CAN'T DO THIS AGAIN!!!!!

I called and talked to my doctor's assistant, told her I was better and didn't feel like I wanted to do a CT, and said unless the doctor had a good reason for it, I was going to cancel my appointment.  She said she'd ask him and let me know.  She did, he said that he'd only ordered it in case the chest x-ray missed something, I know my body best, and so the CT is cancelled.

The lesson for me is:  DO NOT CALL MY DOCTOR if I feel sick but am not in danger of imminent death. My problem was sleeping, and it got translated into breathlessness, which is understandable because that's what they could hear, but then I was going down the wrong road.

Which barely matters, because all roads lead one place:  machines.   And, right now, I am so over CT machines.  So so over them....

Breathe Out........




Oh, and you are welcome insurance company, I just saved you $7,000.00.

Serious Fatigue

Right now, I walk a weird line.  Having written a blog that is based on humor, and now finding myself in a very unfunny place, what do I do?  Do I keep writing?  Do I wait until I can make what I'm experiencing amusing for my readers?  Do I hope for the best, or do I just let those of you who are now invested in my story know what life is like for me, even if it's dreary and complaining?

My plan from the beginning was to chronicle breast cancer in a non-threatening and amusing way, so that when others got it and did what I did - google for first-hand stories - they would find something not so scary. Because, early treatment really isn't scary and it isn't like the movies or TV with all that barfing and crying. All that seemed to be out there when I was diagnosed were blogs of people who died, or those of people who were still writing (and complaining) about cancer ten years past their treatment, making it seem like the worst thing that could happen (which for them it may be, but it wasn't for me and I imagine it isn't for everybody).  I felt like it would be a blip in my life and then over; I'd be annoyed at having one boob and that would be it.  I wanted others to know that people like me are out there -that we had cancer and let it go and that is okay, we don't have to run pink races or be activists or live a life defined by one bad experience.   Since I couldn't find a blog like that - I would write it.

As my treatment ended and I had my 3 month check-up post-therapy I had decided to say good-bye here and close up shop.  That post is half written, lying around on my computer somewhere.

Because of course, I never finished it due to the discovery of mets to my liver.  I now would not be one for whom life would go on, spent with occasional annoyance at my boob-less state but mostly just enjoying my family and career.  Instead, I would have cancer material for the rest of my very short life. Cancer could never be the temporary, nerve-wracking yet interesting life experience that I had thought it would be. It was going to kill me.

Damn.

And, while I could still have some laughs along the way, it was going to get grim.  I mean, death isn't always funny if you aren't slipping on a banana peel.  But I decided to write about it up to the end, or as close to the end as I could get.  Every story needs an ending and while we know mine, we don't know the details.  So I decided to continue along as far as I could get.

And so here I am, not close to death, I don't think,  but also in a very unfunny place right now.  Not as unfunny as c-diff, which is probably the un-funniest experience of my life, but my life right now is pretty miserable.

Where I am and what I'm doing is sleeping.

All the time.

18 hours a day, at least.  I sleep like my cat, who is in kitty heaven having me in bed continually.  I sleep so much  I am only hoping I can finish typing this before I go back to bed.

Now, if you follow me on facebook, you may have seen posts or likes, but they don't give much of an indication of what I'm really doing, all of the time.  Which is lying in bed, and not only lying but also sleeping. I wake up, have to pee, which wears me out so much I need another six hours.  I wake up, walk into the living room to see who is around, which is so exhausting I need to go back and sleep for two more.  Because family is important, and food is important, I do get up and eat, and stay up after that.  My body somehow adjusts itself to stay awake a few hours at night.  But that's all.

Just a month or so ago I had energy.  I was creating pendants (don't buy one) and was excited about life and starting a little business that could help my son with minor college expenses (very minor, like a Starbucks Mocha, but still...). I knew I was sick, and felt sick compared to when I was healthy - but life was okay.   I enjoyed getting up and making the jewelry and picking my son up from school.  I was happy sitting by my computer, watching my hummingbirds feed from a feeder I bought, from nectar I made, and while my life was restricted, those little things were joyful.  I wasn't able to cook dinner for my family - standing for an hour or more was hard and I have zero appetite and believe it or not, when nothing sounds good you don't want to cook.  So, my husband has taken that job over - but I could make myself a bagel in the morning. I read the paper, as I have since I was six. I pick my son up from school.  I went with a friend to a show.

A month ago, I felt like I was getting better and that I'd soon be able to grocery shop again, cook again, live a normal life again.  The cancer was stable, I'd radiated it, I had time, I thought.  It was getting easier to walk, to stand, to breathe.   I told my husband that I thought he'd get a break, that I'd feel good enough to do chores and be normal soon.  One day, I even cleaned the entire living room - dusted, vacuumed, wiped the leather chair, stuff I hadn't done in a year.    I invited people for the holidays, made gifts, thought ahead.  Life was small but okay and I felt like it was going to get better.  I knew it wasn't forever, but I thought I might have some time before cancer grew back and I became ill again.

Then about two weeks ago, I crashed.  I got out of bed at about 10:30 and still felt exhausted, my legs like rubber.  I drank half a cup of coffee, skimmed the paper, and decided to go back to bed. It was just too early.   I slept until 1:30 and got up, checked on the dogs, sat in the dining room where the sunlight and computer is, and then 30 minutes later, went back to bed and slept some more. I slept until 4:30 or 5:00.  I woke up long enough to eat dinner with my family, check facebook, and then nap until  8:30 pm.  My husband woke me to watch TV, and I stayed awake the longest period of that day - until 11:00.  Then I went right back to sleep.  I'd been awake maybe 6 hours that day.

Okay, so this has happened before.  I know what this is, (although not why) and I call it my "downer day."   Tomorrow, I thought,  I'll be tired but better, and the next day I'll be a little weaker but be fine,  and the day after I'll be normal.  For me, anyway.

But that hasn't happened. I'm still sleeping all day.  At first, I thought I was getting a cold, like my son had, but that isn't the case.   I am just completely and utterly fatigued, even when awake, which is just brief periods a day.  During those minutes, I might look at facebook or check my email but it's not long until my eyes start to close.    My legs shake as I walk; they feel like jello and I am terribly achy and weak.  Getting dressed seems difficult to the point of impossible, and I spend the day in PJs, carrying a blanket around like a ghost because I'm cold.  I can't shower as I can't stand on these spaghetti legs, so I take a bath, but not daily.  It's too much effort to fill the tub, get the temperature right, and I'm afraid I'll fall asleep in the middle and flood my house.  I can't come up with words, talking is difficult, and even typing - I make many mistakes.  This post has been days in the writing.

My doctor had prescribed me ritalin for fatigue.  That was for normal "cancer" fatigue - and the drug worked fine for that.  I'd take one occassionally when I'd start to feel sleepy in the afternoon and had something to do, and I'd wake up enough to do whatever it was.   Now I take two and sleep for four more hours.  I'm not even taking pain medicine right now, I'm too tired, too often sleeping.  I should be going through withdrawal, yes?  I've been on pain meds for three years.   If so, I'm just sleeping through it.   This is fatigue unlike any I have ever experienced and it's now lasted two weeks.  I've slept for two weeks pretty much straight.   It's time to confess. Because, what if I don't recover?  What if this is it?  What if my life is like this now and won't get any better?

It's not funny.  I'm pissed.  I have things to do.  The holidays are coming.  A grandbaby is coming. I have accepted, quite gracefully I might add, that my life is going to be cut short.  But I wasn't planning to sleep what's left of it away.  I figured I'd get sick, the cancer would grow, overwhelm my body, I'd have hospice in, and then turn up the morphine.  Bye.  There was nothing in any book I read that said I had to sleep 18 hour days for weeks first.

Supposedly, the cancer in my body is quiet so I don't know why this is happening.  I suppose it could be a form of anemia.  My red cell count is about 11 which is good for me, normal is about 12.  My doctor does a transfusion when I get down to 8.   But maybe there is a form I don't know about, or maybe something else is going on in my blood.  I don't see him until December, however and even then, what if nothing unusual shows up?   And I'm still like this?

Fatigue is common in cancer patients, I read, due to treatments, cell death, etc.  But I have been doing this for four years, there is nothing new. I've been fatigued.  This  is a whole new level of weakness and fatigue and I'm nervous that it won't improve.

When they say cancer is like riding a rollercoaster, they aren't kidding.  At the end of July, still on Gemzar,  I was able to drive to Carson City to see my sick father (and get a speeding ticket) and, while very tired, arrange for his care.  In early August, I had gamma knife type radiation and fatigue was one of the side effects, but it was nothing like this.  By September and October, off Gemzar, I was feeling so good I was planning for spring, imagining college trips, my son's graduation, little doubt that I'd be there. I'd bought myself enough time with the radiation and perjeta, I figured.   Now, I can't get to my front door.  Now, I can't even stay awake. I can't remember what I've done or said I'd do, and confusion reigns.

All I know is my bed is there with me and my cat in it.   My confused husband every once in a while peeks in, to see if I'm breathing, and then leaves.

I just hope this rollercoaster goes on the upswing again.  Because, I'd be really mad if I wasn't so damn exhausted.

Now I'm going back to sleep.




If you paid for a pendant and want your money back, I'm happy to refund you, just email me.  A few are made but haven't been shipped because I got confused so I will do that ASAP.   I still have a folder of orders that I am hoping I can complete as I enjoy doing them very much.  I keep hoping that I will will get back to normal.  Maybe tomorrow I'll wake up and stay awake.  But I don't know that I will, it's starting to make me very, very nervous that I might have to sleep until the sleep is permanent.

2013's Most Disgusting Pink Fundraiser

The worst part about October is that I am always having to defend myself.  "No really," I insist. "I do have a sense of humor."  Or, "No, I'm not a radical feminist; I'm not a feminist at all."  Worse, "Yes, of course I want a cure for cancer."

It seems when you disagree with the concept of the pink ribbon being used to sell product under the guise of supporting breast cancer patients, you are labeled as one who doesn't support "the cause."   But when the items in question are pink vibrators or breast-focused pornography and you object, than not only are you pro-breast cancer, but you are also an old-fashioned, unfunny prude who is pro-breast cancer.    You are a veritable Jane Hathaway of a human being, humorless, sexless, and clueless.

The fact that you, indeed, have cancer yourself, even that you are going to die from it, doesn't seem to change opinions.

They get it, and you don't.

For those of you who land on this page by some search term I can only imagine, all the defense I'm going to give myself  is to remind you that reading more than one page of this blog will tell you whether I have a sense of humor or not.  It's pretty simple to do, and I bet you don't have to read too much to figure that out.  But if you don't want to take the time, just trust me:  I'm hi-fricking-larious.

Just not usually in October.

Every year, I highlight one group or person for worst Pinktober fundraiser of the year.   2013 was the tightest race ever, with the Ironman guy and his breast size-related donation levels;  the sale of the Pink Vibrators for Komen; the "set the TaTa's free" day (encouraging women to go braless for the cure - on Metastatic Cancer Awareness Day no less), and the video in which women walked around laying their breasts on counters while clueless people stared in wonder, to raise "awareness".  (One would presume that's all they meant to raise.)

But the winner became very clear as soon as I saw this and I don't believe I need to wait until the end of the month to make my announcement.   Motorboating for Breast Cancer

If you can't see the video above, try this link.

Last year, my choice was PornHub's Donation to Komen.  That was bad, but they are pornographers and how much can we expect?  Sure, they wanted in on the action, who doesn't?   They are not in the business of caring, and while I do believe pornography exploits women and harms relationships, the women involved in making it have had time to consider what they are doing.  Those who create it - we always knew they were trying to sell product and point attention to certain videos and weren't really about helping cancer, right?   The most disgusting part was that Komen took the money, and while they did eventually change their minds - it was eventually, weeks,  and took many, many emails from outraged supporters. They didn't have the moral compass to do it on their own, and they still don't.

This year, the motorboating "campaign" not only supposes to help cancer patients, but also exploits healthy young women.  The above "men" (and no, I cannot say that word without quotation marks as there is not a chance on earth real men would do this) are putting these young women in a no-win situation.  Do they help the cause of breast cancer by allowing themselves to be sexually used, or do they say no and risk the possibility of looking foolish?

"Miss Hathaway, these women were adults and knew what they were doing."

Ask yourself this: do you think any of those women would have said yes to being motorboated without the lure of a charity donation?  Did they have time to do any research or find out what was really going on?  A group of men walked up to them on the beach or in front of a club, a camera was pointed in their direction,  and the question was asked.  Did they know how it would be used or how they would appear?  How much time were they given, what kind of pressure was there, what would happen if they said no?

"Do you want to save women with cancer? All you have to do is let me motorboat you for a couple seconds. and we'll give $20.00 for cancer research," the boys ask, seemingly to only beautiful girls, a camera pointing straight at them,   "Well....sure" these women say, because you know, who doesn't want to help cancer and how does somebody say no and risk looking insensitive with a camera focused on her?     I'm sure some of our more confident sisters did turn them down,  despite the knowledge that they were being filmed and their refusal could also be used online to make them look like, erm, well, Jane Hathaway.   But truthfully, most of us aren't that confident early on in our lives, we tend to be trusting, and I can imagine being young, confused, and having said yes to this request myself, because I would want to help cancer.  Mostly, I might have said yes because it was easier than what I imagined the consequences of saying no would be in today's video age.

As these boys put their hands on the sides of these women's breasts and push their faces in to their cleavage and make "raspberry" noises, as children are wont to do, you can see the conflict on the faces of the women.  Their body language also tells a story.  They almost universally back up.  Many scrunch their faces in disgust or they look at the camera as if hoping for approval. A few frown.  Many giggle at the tickling but their hands tell a different story - they reach up to push the boys off as they step back, or they keep their hands up, fists closed, protectively holding their shirts as if they could close them.  Many turn away and one even takes a pull on a flask. Only one or two seem to really not mind, throwing their head backs in abandon - a stark contrast to the majority who seem universally uncomfortable.

The difference in  motivation is highlighted when the boys make jokes about the size of the women's breasts. "That wasn't a motorboat, it was a yacht!" said to raucous laughter, while a women sighs in resignation,  "Well, that was my good deed for the day."

"Oh but Miss Hathaway, they raised $7,000 for charity!  And, the charity refused the money.  It's women like you who is going to cause cancer to continue."

I must congratulate the Breast Cancer Research Foundation for refusing the money, and they did it before there was any major outcry, or certainly, before I'd heard of it - but really, their refusal is no surprise.  Like these women, they were put in a no-win spot.  Take money that trivializes disease and makes it about boobs, or refuse research funding.  Really, there was no choice.  They simply stated that the way this money was collected was not in line with their ideals, which by the way, it is not.  There is no chance that they ever would have accepted money gained in this manner, and anybody who has paid even the slightest amount of attention to breast cancer charities and how they operate would know that.

Of course, these online marketeers/motorboaters (they had a promo company help them with the video, by the way) had no clue about this, did they?  They feign surprised that their money would be refused, yet it's almost like they KNEW the money would be refused, and that publicity would surround them based on that.

Why, how DARE a breast cancer charity not take money from people who demean and sexualize women or which trivialize the disease.  Why not take their money from guys who collected it by sticking their faces in women's cleavage.  Hey, lament the guys, we were just trying to help.   The boy's statement about the refusal was both whining and designed to turn up the heat.

"It's obvious that they had to do this because they were getting pressured by a small minority of haters who thought that this video was 'offensive.    So congratulations, haters. Breast cancer research literally just lost $7,000 because of your personal problems with this video." 

So it is we "haters" who are causing breast cancer deaths to continue in spite of the heroic efforts of these boys.  Never mind that the "haters" are pretty much all breast cancer patients themselves, ones who are sick of watching our fatal disease be turned into a sexualized, trivialized, pink boob-fest every October.  Never mind that I, a hater, am dying of this disease and wants a cure more than they can imagine.  Never mind that $7,000 is a drop in the bucket compared to the multi-millions collected in October.  We haters, we Miss Hathaways, we pulled those white horses right out from under those boys' butts and single-handedly set breast cancer research back decades.

How dare we.

It's possible, of course, these boys got exactly what they wanted.  They did a video that went viral, they got to sexually harass women in the process,  but because it's for "cancer,"  anybody who objects gets to be called a prude, making themselves in the right.  They picked a charity that couldn't take the money in good conscience in order to create a fake controversy, which of course, causes the video to continue to be played. Now they are making all sorts of money on this and other videos on their channel with no obligation to give any of it away since the cancer charity they picked - suspecting it would refuse - refused.  They are the underdogs, the helpful heroes, now insulted, refused, rejected.

Dude.  Score.

I've said it before and I'll say it again:  Males finding young, hot girls and "motorboating" them, or guys jerking off to boob porn, women laying their boobs on tables, shirts that say, "Save Second Base" all purportedly For The Cause - it all minimizes and trivializes a disease that we, your sisters, moms, wives and hey sometimes your brothers, suffer from tremendously.  And die from.    

Why are other cancers not trivialized this way?  You don't see Get Some Pussy for Cervical Cancer Research, or Rim Shots for Colon Cancer or  Make-out for Myeloma,  Teabagging for Testicles.   Why not?  Is that beyond the bounds of good taste, but this is not?  Could it be that people understand that folks actually suffer and die from those cancers?  And too much awareness has left breast cancer not about death and disease - but {giggle} boobs?

You know the most common thing people say to me?  "At least you have the kind of cancer people don't die from anymore."  That's what all these pink jokes do, these facebook games, and slogans like "save the tatas."  People have forgotten there is a real disease behind the pretty ribbon, one that doesn't only take breasts, which is mostly only important to the boys in that video.  What is really important is that it takes lives.  It could kill your wife, your mother, your little sister - it will kill me.  Breast Cancer has become a joke, a way for somebody to get themselves noticed in October, to sell their product or get their video to go viral - to get their piece of the pink pie.  Just slap a  pink ribbon on it, promise a little to charity and hey, you can get rich. And, if it hurts the feelings of a dying Jane Hathaway, well, who cares?  She clearly doesn't get it.  How can she?  She spends too much time in the hospital to know what's going on in the real world.

We see through you, you immature boys.  You use the pain and suffering of women, real women, like me, to get your heads where you wanted them and your pockets filled, and when we object, you call us names, because you are the heroes, not us.    I hope you enjoy whatever fame you have received and whatever momentary excitement you got from making this video.  I know you are not worried about the tens of thousands of cancer victims whose pain and suffering you have trivialized, I know you don't even understand that.  I hope sincerely that it never becomes real to you - that it is not someday your wife, or your mom, or your sister who is eventually in my place, planning her funeral, hoping against hope to live to see her child go to college, living with the knowledge that the end is near.   I hope you don't have to watch somebody you love die a slow and painful death, while everybody in society around you uses the symbols of their suffering and disease as a way to make a buck.

I hope that you never have to become men.


Peace,

Miss Hathaway.

Reddit - AMA

I've decided to do an AMA at Reddit.  This will not only give people a chance to talk to me about what it's like to live with end-stage cancer, but it will also give me insight into what other people are interested in, and may help direct this blog some.  Might also be a chance for me to educate folks on pink.

Because Reddit wants proof that you are who you say you are, this blog post will be that proof.

Here is the link:  http://redd.it/1ov8li

Ask me anything!  :)

Mondays At Racine

I posted this on my facebook page  but I thought I'd mention it here because it is so good.  I highly suggest that those of you with HBO record (or, hey, even watch live!) the documentary Mondays at Racine.

It is about a salon run by sisters,  Rachel Demolfetto and Cynthia Sensone, whose mother struggled with breast cancer.  They decided that one Monday a month, they would open their salon to cancer patients and give them free services, from pedicures to head shaving.   While the documentary starts with the sisters, the story really focuses on two cancer patients, Cambria, a young mother just diagnosed with Stage 3 cancer, and Linda, 58, a woman who astonishingly, has survived 17 years with metastatic breast cancer.

It's hard to write this review without spoilers, but let me say that watching Cambria's story took me straight back to the early days of my cancer diagnosis, when my son was young and all was unknown.  But Linda's story is the one that stays with me - 17 years of treatment seems unimaginable to me.  She admitted that she had done 15 chemos by filming - that is 8 more than I've done.  While my goal has never been 17 years, it is always in the back of my mind that some women are statistical outliers and somebody has to be one - maybe it could be me.  But, after seeing her difficulty, I couldn't help but think that some things might be more difficult than death - I'm not sure I could manage this for 17 years - life with this pain, this exhaustion, and with what it does to your family.

Back to the salon:  the women are made to feel beautiful and more importantly - normal -  and they find comfort in a place that caters just to them. They go back to hold the hands of tearful newbies who are having their heads shaved for the first time, Cambria now experienced and with her short, chemo-curly do.

The story ends on a realistic note, as a documentary will do.  I do not think there is a breast cancer patient in the world who won't relate to what these women go through, and also who won't feel grateful for the sisters who provide such a  calming refuge in such a frightening storm.

Mondays at Racine is on HBO, which means you can still catch it:  the 18th, the 20th, 21st and 26th and also on HBO 2 on the 19th and 24th.

When you watch it, let me know what you thought.   Don't read the comments if you don't want spoilers!


_____
Also, I wanted to add that based on a couple of comments, the show, and my own experience, hairstylists seem to be special people.  My own stylist, Cynthia, did my buzz cut when I was going bald at no charge. She made it as easy on me as it could be, styled my many wigs, also at no charge and didn't laugh at me when I pulled them out.  (I originally bought a bunch of cheap ones in many styles and colors, not understanding what wearing them would entail.)   I've practically have to beg her to charge me since my diagnosis. Feel free to check the link out, like her on facebook (she shows photos of her styles and somewhere I'm on there - on of the few times I look good)  and go see her if you are in Sacramento.  She deserves all the accolades she can get.   Tell her I sent you, she does a wonderful job.

Pinktober from a Metastatic Point of View

Today is October 13th, which, as you know, is officially National Breast Cancer Metastatic Awareness Day. What do we Metsters (people with metastatic breast cancer) want you Healthsters (people without metastatic breast cancer) to know about our disease?

First, know that it really is an official day!  There is a formal Senate Resolution declaring it as such, full of "whereas and resolved" and all that legalistic jazz (which would be a great name for a band, by the way).

Where did this resolution come from and who decided on the date?  Why did they choose October 13th, which seems so random,  rather than, say,  October 27th,  which happens to be the birthday of one of my kids?  Actually, I guess I'm glad it's not the 27th as I'd hate to have to choose which day to celebrate.

"I'm sorry honey, but we are going to have to put your birthday off this year - it's NBCMAD, and I have plans to par-TAY.   Dad and I are going to the club to listen to Legalistic Jazz."

I don't know the answer to how this day came into being or why women with early stage cancer get a whole month and a special color and everything, and we, the Chosen Ones,  only get one day.  I do kind of get why the month of October was selected, with the scent of awareness in the air, but it seems kind of forced, don't you think?  I mean, October has been the pink month for decades and October 13th has been Metastatic Awareness Day since only 2009 (the year I was diagnosed with cancer, now that I think about it). Quite the discrepancy.

I'm sure, before Congress was brought in to do the very important work of making this day official, the conversation went something like this,

"Hey, what do you think of including the people who are actually going to die of breast cancer in our Pinktober celebration?"

 "Won't that be too depressing?  Dying chicks don't sell a lot of product."

 "Well, they aren't around for that long."

"How about if we just give them one day?"

Personally,  I would have selected a better month, like April, which is full of hope and promise rather than October, which is full of death and decay.  And October the 13th?  Why?   Did a Friday the 13th roll around, and somebody across the street from the Komen offices (because we know the actual Komen people don't care about metsters) decide to get ready for Halloween and while they were searching eBay for the perfect costume  - one with amputated body parts and glowing bones - suddenly make the death/cancer connection and think, hey! It's Friday the 13th!  This would be the perfect date to let people know about Advanced Breast Cancer?

One wonders why they didn't just choose Halloween, with its built-in focus on death.  I mean, really, is there a better day out there to represent us metsters?  None of us get out of this metastatic cancer thing alive, and honestly, if you saw my mid-section, you would know I need no costume, with the winding scars from numerous surgeries, the puckering muscles, the weird reconstruction, bones sticking out everywhere, topped with grey, scarecrow hair.  I'm the perfect representative for a Halloween Metastatic Awareness Day.

But then, I guess if it fell on an already established holiday, we metsters would not get our rightful attention.

Which, as it happens, we don't, anywhere in the world of breast cancer, from support groups to charitable endeavors.

And, I guess, this begins what we want you to know about Metastatic Cancer:

We are the Ugly Stepchildren of Cancer
While early stage girls are dressing in pink outfits, putting their hair up and going to parties where they get crowned "Survivors," those of us with metastatic disease (aka the Losers)  are left inside, sweeping the stone floors while gulping our Dilaudid, knowing the only Prince who will rescue us is the Prince of Darkness.

We have such different concerns than the early-stagers that it might as well be another disease. Early stage women are nervous about: mastectomies, how their reconstructions will look, missing work, what chemo/radiation will be like, and the biggie, will cancer come back  - all of that is valid, and I was nervous about it all too -  but it has zero to do with those of us who have had a metastatic relapse.

We are, frankly,  beyond those concerns.  What your breasts look like when you are hoping to live to see your child's next birthday - not on the radar.  When you are on your 8th chemo, you know what it's like. We aren't afraid that cancer will metastasize, we are afraid we won't know the right time to call hospice.   We are concerned with death planning, disability and insurance, how our children will grieve and how we can help them ahead of time. Some of us are hoping to find somebody for our husbands to remarry - I mean, she has to be nice to our kids and very sweet, but not too cute, if you know what I mean.

We wonder:  do we write letters or make videos for the kids or will that upset them?  How much funeral planning do we do and how much do we let our families do?  Will treatment cost too much and leave them destitute?   Will I know when to give up?  How much pain am I supposed to take before I ask for more meds, and if I take too much now will it render it ineffective during end days when I really need it? Should I buy that perfect Christmas present in August, knowing I might not be there to give it away?

We cancel all our magazine subscriptions, we write our passwords and hide them away for our husbands, we throw away that childhood diary we don't want anybody to read, we go through our treasures and mark them with what they are and who they should go to and why.  We slowly give things away so our family doesn't have too much junk to go through, and we never, ever, take advantage of out-of-season sales.  Why buy summer outfits, even at a deep discount, when it is October?  There is a strong likelihood we won't be there to wear it in July.

We are mourning our lives while living them, existing in the shadow between life and death, all the while wondering how long until the final chemo stops working.

Our experience is different than that of an early stage woman, and you may not be aware that there are very few support groups across the country for those with end-stage cancer - believe it or not,  there is no help for us in facing our own deaths.   Early Stage women have a support group in every city in the country; they have navigators and special camisoles and brochures to guide their way, and books! Hundreds of books about early stage cancer.

Metastatic women?  Almost nothing.  I believe there are fewer than ten support groups for advanced cancer listed in the US.   Despite our differing needs, we are lumped in with all breast cancer groups, and worse, we have, in droves, been turned away from early stage groups, pulled aside and whispered to by coordinators, saying "you will frighten the early stage women."  There are very few books for metastatic women as compared to the hundreds for early stage.   Even online support groups end up with women fighting about whether early stage women should be allowed to post in the Stage IV sections.  Many argue that they should be allowed there because they could have metastatic cancer any time, as if that means they understood what it is like now.  There seems to be little available for our emotional needs.

We don't fit in with our "pink sisters."  Our concerns are very different, yet we are expected to be just like them, after all, it's breast cancer.   Alone, we are left to deal with real issues of life and death.

You Can't Tell by Looking
There are a wide range of women with metastatic disease. Some have a low volume of bone mets and are still doing easier hormonal treatments.  They work, they look healthy, and you might never know they have advanced cancer.  They might look normal, but I assure you, they don't feel normal, and it only takes one scan to put them in a different category of functionality.  One where I am now - a person who is doing well but is somewhat disabled (which is still hard for me to imagine).  I have done seven different chemos and had many abdominal surgeries and had a life-threatening illness from which I'm not sure I'll ever recover entirely.   I can't work although I'd love to.  I am in pain, sometimes quite a bit,  and I have to limit myself, but if you saw me in line at Spirit Halloween buying a Grim Reaper costume, you might think I look a bit thin (and be super jealous, of course) but you wouldn't assume I was buying a costume of my twin.

Then there are women who are really struggling - they are on oxygen or in wheelchairs.   No matter how much cancer shows physically, all of us are dealing with end-stage cancer, and conditions can change quickly.  I've seen women in wheelchairs live four years, sometimes get up and walk again.  I've also seen women die 3 months post-skydiving trip.  You can't tell. This disease can turn on a dime.  If you know somebody with whom you need to make peace, do it now rather than later.  Later may not come, even if your friend looks fine.

Chemo Is Not Harder if You are Bald
Oddly enough, people think that if you are on chemo you will be bald.  Not all chemos make you lose your hair.  The chemos that they give for early stage breast cancer as a preventative treatment do cause hair loss but most of the ones for advanced cancer do not.  Know this:  how hard a chemo is on you has nothing to do with your follicular status.   I have felt a lot worse on chemos that left me with a full, lush head of hair than on chemos that left me looking like Crazy Britney.   If you hear we are doing chemo, you should pity us and bring us presents, even if our hair is shoulder length.  Actually, you should pity us more, because we have to do chemo AND shave our legs.   Assume nothing by what's on the head.

Treatment Never Ends
We want you to be aware that when you have Metastatic Breast Cancer, treatment never ends.  People often say to us, "Oh, how long are you going to do chemo? like the answer will be four or six rounds as it is with early stage.  The answer is we don't know.  We will do it until our cancer cells morph and mutate and learn to not die in its presence,  and then we'll switch to another drug.  I have done 7 chemos.  I have had half my liver cut out.  I have had microwave ablation and then gamma knife radiation.  I have done 3 targeted therapies.  As soon as one thing stops working, I start something else.  Cancer wants to live, it evolves like a cockroach in the face of a pesticide -  it learns to survive.  Eventually, there will be nothing left and that is when, I hope, I will be strong enough to call hospice.   So don't ask a metster how long they will be on treatment, or when they'll be done.  The answer is "never."  They will never be done. When they stop, they die.

Awareness is Not for Us
Awareness has never helped a single cancer patient, metastatic or not, but it is especially annoying for those of us who are losing the "battle" with cancer.  If you see the word awareness in a charity description, on packaging or on a flyer somewhere it's code for "we use our money in ways that won't help anybody who is actually sick or dying."

We want you to know that we need your money donated to charities that focus on RESEARCH.  Say that with me boys and girls:  R.E.S.E.A.R.C.H.  Here is some awareness for you - only about 5% of all monies donated to breast cancer charities end up helping metastatic women.

And, of course, you are aware that only metastatic women die of cancer, right?

Put those things together and you realize nobody is trying to save us.

We selfishly want charitable money to go to smart scientists in labs who can come up with a way to stop those cancer cells from dividing.   The good news is if they can figure that out, they can save early stage women too. They can save women who do not have cancer.  But they need money.

In the meantime, we are also okay with money going towards scholarships for our kids (most of us with end-stage cancer have had to give up our jobs) or direct patient services (such as rides, food, housecleaning and repairs, help with copays, a place to stay for our families if we have surgeries in other cities, etc).  My husband and I both worked and set ourselves up in such a way so we could live on his salary - all of mine was going to fund my son's college education.   And,I had to quit my job, thanks to cancer. Not to brag, but despite it all, my son has a 4.68 GPA in a difficult program and participates in many extracurriculars (which my husband has to drive him to).   A scholarship acknowledging how hard this experience must have been for him and how successful he's been in spite of it would be nice, but there are surprisingly few.

Pink Ribbon Tattoos?
Maybe I'm alone, but I find pink ribbon tattoos very puzzling. Granted, not all women hate the pink ribbon, not even all metastatic women (although all I know). Jewelry is one thing.  But some women tattoo the pink ribbon right on themselves, which confuses me.   I wonder - what if the woman was metastatic, if she understood that she would die of this cancer - would she still want that symbol on her permanently?  What if she wasn't metastatic and then down the road, became so, like 20% of women do?

If one lovely spring morning you were walking down the street, and roaring up behind you came a Peterbilt truck which slammed into you, squishing you flat as a bug, leaving your family behind, your children motherless, your husband without a wife, your workplace without their employee - and if you somehow caught a glimpse of this future - would you go out and tattoo a big Peterbilt logo on your ankle?  Or if, say, it squished your husband, would you memorialize him by inking a truck on you?

Maybe some would.  Hey, it takes all kinds.  But that's what a pink ribbon tattoo looks like to me, a metastatic women.  It's a symbol of the disease that's going to kill me.  And, it doesn't deserve a place of honor on my skin, where I have to look at it every day.  Not that you could see it what with all the wrinkles and scars and such, but you know what I mean.

"I almost died."
I love the TV show Parenthood, and one of the main characters just went through breast cancer last season. Already her hair is longer than mine is and last time I was completely bald was 3 years ago - ah the magic of Hollywood.  Anyway, Christina is doing what I suggest people do who have had cancer - live life fully, take advantage of this one chance you have, fully embrace it, don't look back.  So, she is running for mayor of her town.  You go, Christina!  Where's the ballot, I should be allowed to vote in TV town.   At one point in the show though, she was having an emotional moment with her husband, who is not as fond of her idea of being mayor as she is.  She started blubbering about her cancer and she said, "I almost died." and he agreed with her, "Yes, you did.  You did almost die."

And I'm sitting here thinking, "she did?"  When did she almost die?  Did I miss something?   She was Stage II, she did chemo, she had a lumpectomy, her doctor said throughout she'd do well, and now she's fine. Sure, it could come back, it can always come back....but it probably won't.  So, how did she almost die?  I never thought I was near death when I had early stage cancer, so what happened to her?  Was it off camera?  Did she have c-diff and go septic and her blood pressure crash and she was minutes away from death?  Why didn't they show that then?

TV People:  Having early stage cancer is not synonymous with "almost dying."

That statement is like the women I mentioned above who protested us metsters having space to talk alone about our specific concerns,  whose excuse is, "I'm not Stage IV yet" as if that puts them on the same level. They may have a 20% chance of becoming Stage IV, and I'm the last person to say it can never happen. But if they are still fine, if the odds are still good - why live with that "yet" hanging above a head like the sword of Damocles?

If you tend to do that, you can leave it off, you know, and just say, "I'm not Stage IV." Do that and give yourself that gift.

Speaking as a person who actually has a fatal form of the disease, who will die from it, it makes me ineffably sad hear the "almost diers." It's like every time you get out of your car after driving home from the freeway and saying, "Whew, I almost died."  Sure, you could have gotten into a crash that killed you, because you are in a thousand pound vehicle on a fast road with goodness knows who else - but you are still here.  Don't take that away from yourself.

Having early stage cancer makes you think of your mortality; you may be fearful that it will metastasize, but fear and worry is not the same as living it.  Christina, you didn't almost die.   You had a disease and were treated for it.  You were never close to dying.  Your friend there, the one who is Stage IV and is still going to chemo, the one who is still getting infusions and whom you say hi to each time you go in for your three month checkups?  The one who encouraged you to run for mayor?   SHE is dying, not you.

Thank goodness.

You might wonder why we need a Metastatic Awareness Day.  And, the truth is, we wouldn't if we didn't have the pinkness of the rest of the month bearing down on us.   However, years of ribbons and fun runs and soup cans and pink vacuum cleaners, and  inspiring phrases such as "save the tatas" or "save second base" or people who proclaim their near death experience when they were not near death have trivialized metastatic breast cancer to the point that one of the most common phrases people say to us when diagnosed is, "Well, at least nobody dies of breast cancer anymore."   And, that is even after we tell them we have mets.

So today, on MAD, I think you should know:

Metastatic cancer is not curable.  People die of it.  And I am going to be one of them.

Turn the Tables

What if it was like this?

The man, sweaty and cramping, groaned as he woke with a start. He was, once again, lying in his own mucusy shit. He painfully turned to his wife and gently woke her. On shaky, weak legs, his heart racing, lightheaded and wheezing,  he stumbled to the bathroom, leaning on the furniture to rest as he made his way to wash up.  His hands were trembling so much that controlling the shower head was difficult, and it felt heavy - he had trouble directing the spray. His sleepy wife stripped and remade the bed, wearing gloves she kept by the bedside, throwing the dirty bedding in the wash. Filth washed off, the man reluctantly put on a diaper to save his wife more interruptions and weakly returned to bed, feeling like he'd climbed a mountain.  He was embarrassed at being unable to control his own bodily functions and being as weak as the baby he felt he'd become.

Four years ago, he'd been a healthy athlete, an Ironman competitor. 185 pounds of pure, rock solid muscle, strong and fit.  His life had focused around athletics. His body was a highly-tuned machine, one he had taken for granted; one that would do as he requested as long as he took care of it. Now, he was wasted and withered, 120 pounds at 6'2", muscles hanging from his joints like fraying twine, unable to reliably control the most basic of bodily functions. Even a port-a-potty at the bedside didn't guarantee a night of no accidents. Breathing required oxygen. Eating was painful, each bite of food hit his stomach like a punch. Not that he had any appetite, he ate only a few bites a day and that was to satisfy everybody who was nagging him. He knew they wanted him alive, but they didn't understand what it took. Sometimes, he felt like he was the only person who knew what was going to happen.

Four years ago, he'd sat in a brightly lit medical office and, stunned, heard the words "You have testicular cancer, and it is incurable". The athlete in him denied this, focusing on what the doctor said next, "but we can treat it for some time, there is lots we can try." Hell, he was an endurance athlete, this would be easy compared to that, he thought. He was a winner, this was no different. Just look at Lance.  He would not only be treated, he would thrive.

Four years later, he knew differently. Enduring a 100 mile run or 140 mile triathlon was difficult, but it ended. You prepared, you built up to it, you fueled your body properly. Once the day came, you powered through cramps, pain, exhaustion, but you knew it would have a triumphant ending. When you finished, you then rested, you recovered, you treated your body right, and if you wanted to, you did it again.

What he didn't know was that treating end-stage cancer was like the run that never ended. When you stopped, you died.

He recovered well from his first surgeries and initial chemo was a breeze; his pain was minimal. He was able to keep working, keep exercising, although he grew increasingly tired and weak.  "Peace of cake", he thought.  "Doable."

48 months later, on constant chemo, cancer continuing to grow, subsequent surgeries, septic infections, hospitalizations, it had all taken its toll. 500 appointments later, hundreds of scans and tests, on his 11th chemo, tumors taking over, pain his constant companion, he'd had to quit the job that gave him satisfaction, quit the competitions that were his love, go on disability to help his family, become a drain on society rather than a contributor..

Him.  A former triathelete, successful in his career, successful in supporting his family. Disabled.

He now shuffled through his days, often pulling an oxygen cart behind him, lungs too filled with tumor to go without supplementation for long. No more romantic nights with his wife, no more taking care of her.  Quite the opposite.  His wife, his pretty wife, had to do everything, down to cleaning his soiled bedding, and he no longer felt like a man. She hadn't signed up for this and he felt guilty.  She went to work, she drove the kids to school, to events, she did the shopping, she took the animals to the vet.  She even coached the kids' games. There were days he mustered the energy to watch, sitting on the sidelines with a blanket around him and a stadium pad protecting his bony butt. He cheered the kids on and shivered in the 80 degree cold.

He was always cold.

And yet he wanted to live. His wife, his children, they were important to him above all. He learned to give up the things that formerly had given him a sense of completeness and success - races that made him powerful, weightlifting that made him strong, a job that supported his family, and learned to became satisfied with what was left: his kids giggling, playing a simple board game, laughing over a TV show, an hour or two without pain, sleeping through the night.

It would have to be enough, and he wanted it to last.

One afternoon, he was home watching TV when the doorbell rang. He slowly got up to answer, pain in his back and stomach increasing, nausea beginning as it often did when he stood up.  He opened the door to find a perky, athletic looking young woman standing there in bike shorts. "Hi!" she said cheerily, barely looking at him. "I'm collecting money so I can ride in a 1000k bike race to support testicular cancer. It's a terrible disease, my good friend had it a few years back,  and now he'll be riding with me."

The man sighed wearily.

The girl continued, pony-tail bouncing,  "If I earn $3000.00, I can race for free and half the money goes towards my charity, which is the Tiny Balls Foundation.  They provide information to middle school boys in gym class so they can learn to 'check their balls'.  I have several levels of sponsorship you might be interested in. The first one," she paused and smiled big, "is the Nutsack Nipper, which is only a buck. For that, I will glance and point at your fly and give you a wink." She laughed and said, "I'm sure your package is worth it and we can support cancer for a $1.00!  I'll even let you take a picture of me pointing!"

He stared at her.

She continued. "Level Two is Nads No More. For $5.00, you get a squeeze ball to remind you of what some men can't do anymore,  and I will personally give you a shout out on YouTube as soon as the race is over."

He shook his head and tried to shut the door, but his oxygen tank got in the way. She suddenly seemed to take it all in, the tank, the bathrobe over his distended belly, beanie covering his wispy hair, his unnaturally thin body. He said to her, "I have advanced testicular cancer."

She went on.  "Oh, I hope you're okay.  Like I said, I had a friend who had cancer and he only has one ball and is fine now and his wife doesn't even mind,  so I know what you are going through!  He's such a hero!"

Confident, she said, "I'm sure you'll be fine, nobody dies of testicular cancer anymore,  and you must want to donate then, huh? You can really help cancer patients if give me $10.00 for the Hairy Cherry Package.   Hah, package, get it?"  she giggled.  "For that, I will give you a Red Solo Cup that you can use at my race to fill up with beer as many times as you want!"

The man said, "Aren't you aware that alcohol is linked to cancer? Besides, it's unlikely I'll live to see your race."

"Oh, sorry" she continued, as if she didn't hear. "My grandma died of ovarian cancer so I know all about it. Wow, she really suffered right before she went, I hear.  Okay, how about the Stolen Family Jewels level then? For $20.00 you get a Crotch Rocking Athletic Cup as well as a pack of condoms!   Or, maybe our corporate sponsorship would interest you, our Hanging Brain level. Your prize is an hour with a hooker!"

She handed him a flyer, which had a picture of a squirrel wearing a jock strap, colored purple, with a smiley face on the front above the phrase "Show your support, save the nuts" on it.  She had also included suggestions for ways people could show support for those with cancer, miraculously all of which also helped her:  cheering her on as she races, tweet her campaign to raise money, contribute extra to her so she could also buy a new bike and ride in more charity races.  There were, of course, incorrect statistics about cancer as well as an incorrect synopsis of Lance's story.

"Save the nuts," he thought wearily. "How about save the men?"

The disease that had taken him from a strong, athletic husband and father to a walking skeleton, which had robbed him of his future, would soon leave his wife a widow and his children fatherless,  was a now a method for everybody to make a dollar. The "Tiny Balls" Foundation, he knew, did nothing with the money they raised except print wristbands for teens to giggle over, and not a dime went to research to find a cure. Their popularity meant everybody and their mother wanted in on the action, hoping to prey on the sympathies of others.   Who says no to helping cancer patients?

This disease, the one that had amputated two of his body parts and taken his sex drive, that had taken part of his liver, colon, his lungs - his manhood - and soon will claim his life, was just a way for this young pony-tailed girl to make cutesy, immature jokes while trying to grab their piece of the testicle pie.

Of course, this wouldn't sink in to her if he explained it.   She wanted to run a race and had found a way to get others to pay her entry fee, no different than all the corporations hoping to up their sales by slapping a purple ribbon on a product and donating a few cents to the Tiny Nuts foundation.  Whether their product may cause cancer or not is irrelevant to everybody.  You can't keep the machine going if everybody is cured.

He thought sadly that without even realizing it, this woman was using her friend's pain as a tool to get what she wanted, and the suffering of others was just an abstraction to her, even when right in front of her.  Her grandmother had died of cancer?  A story she could use to make her greed okay.

It seems the only people who recognize the fraud this type of fundraising is and how much pain it can cause are the ones who die of the disease.  And, they don't complain for long.

The man gently shut the door, slowly pulled his oxygen cart back to his chair, sat down, shut his eyes and waited.





What if there was a month for men's cancers? Would it be treated with the same childish focus on body parts and the same disregard for human suffering as breast cancer is in October?  Would everybody try to make a buck?  Would we have tee shirts that say "Save the hard-on?"  Would men walk around in shirts that say, "Yes, my balls are gone, the real ones tried to kill me?"   The shameful part of all of this is that women started it, and women perpetuate it. 

This disease has nothing to do with breasts. It's about having cancer.  In some of us, it becomes a fatal, incurable disease. And, those of us who do have advanced cancer suffer in unimaginable ways that changes our perspective.  Even a women with an earlier stage cancer can't understand it - unless it happens to her, of course.   October and its focus on breasts and cutsie-pie pink and selling products is demeaning to woman who are going through unimaginable struggles.

Would men let it happen to them?