Sunday, February 1, 2015

Sign a Petition

I am still NED.  It has been 7 months that cancer has not reared its ugly tumor-shaped head and attacked my liver.  It now feels like maybe it never will again, that despite the odds, I am going to be one of the few metsters to beat this, thanks to the new drug Perjeta.

My world has opened up again, my perspective wider.  I think about the future, I plan and believe.  I am now working on regaining my physical health.  Five years of severe illness, chemos and surgeries has left me with wreckage; even standing is difficult.  I have started to exercise with personal trainers certified to work with cancer patients  to try to restore strength and energy.  More on that in the next post.

All good news has a downside  - I now believe I will live to see another October.  I'll have to be disgusted by yet another month of football players wearing pink, another month where the focus is on boobs and not disease, another month of using cancer to sell product and one in which the ribbon flies and everybody is a survivor.  Another month where death, destruction and disease is ignored.

Oh lawd, I still have a hangover from the last one, let me grab my oxycontin aspirin.

There is no escaping it.  October is now a national holiday, a month of pink cause marketing, where the story of triumph over illness sells products ranging from soup to nuts.  It is part of the cultural fabric of our lives, and as much as I know how off and wrong it is, how absurd the focus is - there is no changing it. Most people don't think deeply enough about it.

Is it too late for any good to come of it?  I started wondering, is this a total loss?  We will never change the culture, but what if we can start to change the flow of money?  It started out as an idea to be helpful - can it perhaps become that way again?

What if we appealed to the major charities - Komen especially but many others and requested that they spend 50% of their money on research grants?  And, ask them to be transparent in what they spend it on as does not happen now?

Let's let them keep their ribbons, their races, the pink everywhere, their name in lights and the partnership with fracking, alcohol and other companies.  Let them keep the illusion that "awareness" means something.

What if we could let them keep doing what they do, but convince them just give more of our donated money to researchers who are actually working on the problem of coming up with treatments "for the cure."  Not only medical researchers but people who are inventing technology, those who are working discover genetic mysteries and similarities and more.

For those of us with cancer, both metastatic and early stage - if we know money is being spent well, if we know that early detection is not the only focus of October,  maybe we will not want to crawl under the covers and stay there.   Maybe researchers won't have to beg for funds or, hire grant-writers, or waste time or drop projects.  Maybe money can flow easily to institutions and researchers that need it.

What if we asked the big charities to keep doing what they are doing, but to promise to give 50% of their money to medical research  instead of the average of fraction they do now?  And tell us who they are giving it to?

Can't hurt, right?

So I started a petition.

Please go read it, and then sign it.  Share it with your friends, and ask them to share it with theirs and on and on.  If we can get tens of thousands of people to say "this is important" they will have to respond.  And respond directly, rather than indirectly as in the past.

It takes time for institutional change. We won't change PinkOctober in a day.  But you have to start somewhere.   Maybe, just maybe, we can turn that flood of useless pink and the cliched story into something good - as it was meant to be from the beginning.  Maybe we can stop Susan G. Komen from rolling in her grave.  That girl needs a rest, I think.

Sign the petition and share it with your friends.  Thank you.

Saturday, January 24, 2015

"Just"




The word "just" got me in trouble the other day.

Deservedly.  I am bending over for my spanking now. Please be gentle.

Somebody had sent me a link to an article about an extremely attractive women with DD breasts who had been diagnosed with the BRCA mutation at age 19.  By 27, she had made the Sophie's choice to have a prophylactic double mastectomy.  I cannot tell you how much I admire that woman's courage in facing up to her odds of contracting cancer and removing body parts that were, indeed, quite spectacular.

As her surgery got close, she went down Road Obvious and threw herself a big good-bye boob party, with boob cupcakes,  treats, and boob-related decor. She got some press, perhaps because of her looks, perhaps not, (although articles did prominently mention her cup size).  Anyway,  I can't imagine this is a rare thing to do, but here it was in the media available for comment.   This event was touted as being empowering for women yet the entire article's core was on the loss of her breasts rather than the story I would have liked to see as a metastatic cancer patient: she is outsmarting cancer.  

It seemed to me that the whole piece, with pictures of her topless and photos of boob-shaped food, spotlighted the horror of a hot woman having a mastectomy rather than the triumph of avoiding breast cancer. The death of her mother and sister from breast cancer was mentioned - but relegated to a sentence, with nary a photo or name.

It is horrible to have a mastectomy.  Cutting off any body part is a choice nobody should have to make.  I know that first-hand. I can't imagine how hard it would be to do that before cancer had occurred, but I'm grateful that science has given her the ability to change her future. Unfortunately, the article said none of that; it was all about her coming to terms with the loss of her breasts.

I posted a link to that story on facebook, with the following comment:

"To be honest, I joked about a good-bye boob party too. Humor is the way I handle things. But that was before I truly understood the media event that is breast cancer, and the trivialization of a serious disease. This woman doesn't have cancer, she just has the BRCA gene. So I am sympathetic to her but I don't find these things "empowering" to women."

Oops.  The word "just" was the word people lasered in on and a few thought I was being dismissive of her, that I thought having the BRCA gene and having to go through what she did was insignificant.

Actually, I commented on it because I thought that her experience was MORE significant than the way it had been portrayed.

It was a very poor word choice, no question, and the whole thing was hastily and thoughtless written. That "just" didn't show that I honor that woman's strength, or those who have made the same choice.   She also certainly has a right to throw a party that helps her deal with a tragedy and which provides her comfort. I know a person can only be where they are, including me.  Five years ago when I started this blog, I only had a vague sense of the pink world and I, too, thought about having a bye-bye boob party (as you can go back and read.)   As I have gone through my various treatments, become metastatic,  and gotten deeper into the cultural and medical aspects of this disease, my eyes have opened.  My interest in writing about it has become one of encouraging the public to remember that breast cancer is a potentially deadly disease, instead of the current focus on pink and ribbons, bras and boobs. Although unclear, my thought process was about the event coverage rather than her decision to have a party. 

As a culture, we deny the seriousness of this disease.  If you don't believe me, just remember October.

In this case, it seemed that the media was mourning her insanely beautiful boobs instead of celebrating her chance at an incredible, successful life.  From my perspective, the article missed the point and followed the typical line of "save the ta-tas", which is why I linked to it.

I should never have used the word "just."  Mea Culpa.  I used a diminishing word and certainly didn't explain my point well.  Get out your paddle, I'm bent over and am willing to take it.  I did lose some facebook "likes" over that word, and trust me, each loss hurts,  but I have to admit, sometimes it's deserved.

But..... and there is always a but with an apology...it got me thinking...

Even if I had meant the "just" personally, am I not allowed to even recognize differences in experience?  Is it incorrect to think that one person might have had a more difficult time and thus more depth of wisdom than another?  Do we all have to be even?  Is being diagnosed with the BRCA gene and having a mastectomy always to be considered the same thing as living with five years of increasingly difficult cancer treatment and an incurable prognosis?  

Heck, I know there are people out there who have had it worse than I have, lots of them.  Lisa Bonchek Adams is struggling right now, with the spread of mets to her brain and liver. She's back where I was after c-diff, when moving ten feet was a triumph.   Roger Ebert lost half his face and had great physical suffering before his death. Many have suffered more, been through more, have learned more.  Many never got a period of NED as I have been fortunate enough to receive,  and many have died swiftly.   Do I think they had it worse than me? Yes.

Do I feel that negates my experience?  No.

Obviously, the word "just" was wrong and I didn't mean it the way it came across and when I realized how it sounded, I swiftly changed it. But if Roger Ebert had said to me "You just lost your breast, I lost my face" in the context of how people look at you - I wouldn't call him wrong.   How could I?

I especially wouldn't find him wrong if I'd known he had spent a lot of time and energy advocating for all people with facial cancers, even those who were not disfigured.  I think anybody can make a slip of the tongue, or fingers, and sometimes a "just" has to be put in context of an entire conversation or body of work.

There are differences in experiences, and what we learn from those experience can change over time and we should not be afraid to say that. I would have thrown this party six years ago but now I would find it feeding into the pink maw of misinformation.

No one can quantify suffering.  It should not be diminished by the word "just."  There is no question about that.  But my thoughts were about the media portrayal of her suffering.  Someday, I would like to see a story like this with a BRCA+ woman taking control,  but instead of a good-bye boob party, she would throw a Hello Life party, with world-shaped cookies and decor to reflect the future she has given herself.

It seems in the world of breast cancer, we often require DDs to attract attention, and once attracted, the point that this is a tragic disease is lost.

I just think that's wrong.






Sunday, January 11, 2015

Time Passes...

When my son was home from college, we watched the "Up" series - 7 Up to 56 Up, one per night. It's a fantastic documentary series, but it made me realize how impossible it would be to capture what has happened to any individual in 7 years.

If I'd been in this series, last time they filmed me I would have been a school secretary, raising my kids, healthy and happy, hopes for the future - for my children's lives,  thinking my husband and I would retire and perhaps move to Arizona where we'd travel, grow old together.

Cut to today.  Those of you who have read from the beginning know what a long, difficult road the past five years has been.   It would be impossible to share it adequately in a ten minute TV segment, and so what they would show is a woman who appears happy and healthy.   The years of worry, pain, fear, acceptance - all would be glossed over.  And they have changed me so much that I believe these have been the most important years of my life.

The Soul Pancake people did a good job of capturing the love I feel for my family and what living with disease is like, but it's hard to get the day-to-day struggle I have experienced and still am going through.   It is also impossible to understand the amazing experience it is to still be here after having very little statistical chance.

Oh, I can describe what I've been through in a short paragraph.  "I was diagnosed with stage II breast cancer in 2009 and had a mastectomy, chemo and a year of herceptin.  Metastatic cancer was found in the liver in 2011, and since have had a liver resection, ablation, 7 chemos, SBRT, nearly died from C-Diff Sepsis,  and finally achieved remission with the Herceptin/Perjeta combination."

That describes the story - but doesn't tell it.

Can one?  People are visual, and I don't really have many pictures of myself as I went through it, but could I tell the story in a short time with what I had?  

I did a little short video with flipgram to see if I could sum it up.   This barely skims the surface.  But here it is.



I have a PET scan coming up.  I have pain in my right side that I honestly believe is scar tissue and not cancer, but we have to check.  I hope it shows I'm still in remission but won't be disappointed if it doesn't.   I think it will be fine though, and on the 21st I start an exercise class for cancer patients to try to control some of the pain and strengthen my body.  I am clawing my way back to that woman of five years ago.    I once again have plans for the future, different ones than before.  Now have to include medical treatment every three weeks, and all that comes with that.  I am not going to leave the state, I'm not going to start over with new doctors and insurance, and I am not healthy enough to travel, at least not yet. But I have plans just the same and that is miracle enough.

I look at the people in that Up series a little differently because I understand that there is no way that their experience can be captured accurately.  Think back over the past five years of your life - can you sum it up in ten minutes in such a way that people understand all you have experienced?

Wednesday, December 31, 2014

Good-bye 2014, Hello 2015




It is the last day of 2014.  It has been an interesting year for me - one of incredibly good news, and yet also one of transition.  In some ways, I think it is as difficult to stand at the precipice of death as it is to stand safely a few steps back.   The view has changed, which has required an adjustment in not only thinking, but also in being.  Before I was dizzy, looking down at that long drop in front of me. Now I am steadier, looking out at the trees and hills with the horizon beyond. I face the knowledge that an earthquake could send me over at any time, but it is my choice whether I look down or up.  I am choosing up.

And so I am going to plan for improvement in this coming year.  In 2015, I hope to regain some health, strength and energy, whether the end goal is to live life or to prepare for new chemo. Beginning in January, I will be taking a 4 month long exercise class for cancer patients.  It is twice a week, 2 hours at a time, and I had to sign a contract stating I would show up. I will get personal training by somebody who understands that my body has been flayed from breastbone to waist, that my chest muscles have a foreign object in them, that inside my arm is a tube which is threaded through the veins that lead directly to my heart.  The person who will take my hand and lead me back to strength understands what years of chemotherapy can do, and will teach me to be in my body again rather than trying to pretend it isn't there.   I am eager to see if four months can turn back the clock a few years. I know that if I had to live the past few years all over again, starting from where I am now - I wouldn't have made it.

When I think back on my days of health and all that I could do before my diagnosis, I feel like that was an entirely different person. Getting up, going to work,  grocery shopping, driving children, cooking meals, the normal chores of day-to-day life have seemed beyond me.  Pain is my companion and weakness drags me down and sleep takes over everything.  Nobody would see me and say "Oh, she's sick" and yet I feel inside like an old woman, sick, every movement causing discomfort, not strong enough to do normal things.  It is time to change that while I can.   I look forward to regaining strength and muscle mass and feeling like my body is functioning again.   Heck, I might even be able to open my own prescription bottle!  (Do I dare to dream I can toss the bottles away?)

I've already started doing my part, as requested by my trainer, by eating slightly better.  I do have food aversions, and I was living on a few hundred calories a day. He told me my body cannot recover without fuel, which of course I knew.  So I now eat an egg and piece of toast in the morning.  When I start to work out, I'll add a smoothie and some protein powder.  I do feel a little better just adding an egg before I start my day.

I will be speaking at SXSW 2015, and am hoping to find a way to fund other metastatic cancer patients who want to attend.   It seems to me like the people who should be there are those who actually have a stake in this disease.  Look for more on that in the future.

Another goal is to work on methods to keep track of things.  My memory is unlikely to get better so I need to figure out a way around it.  For example:  I sent some Christmas cards, but I have no idea to whom.  I did some, got distracted, and by the time I wanted to do more, I couldn't remember who'd I'd sent them to.  I should have kept a list.  I am supposed to return calls, mail things, respond to people, and I have no idea if I have or not.  I've had to become passive, waiting and hoping people will contact me and remind me.  This is very unlike the real me so I need to figure it out.  Other people can rely on their memories - not me.

I really want to be a better friend.  So many people have been so kind to me, and it is rude to not get a response or thank you or something stating that they have meant something to me, and yet that is exactly what I do. My short and medium and even long term memory have serious gaps, and I really must learn a way to overcome it.  I can't remember if I sent somebody the card I'd thought about, the thanks I'd wanted to do.  It's as if my thinking "I need to send Koryn a card" turned into action into my brain, and I can no longer tell what's real and what was not and if it was done or not.  I thought about it, so it might have happened.   So even if I have to write everything I do down, it's a habit I must get into.

My last goal is to write an ebook.  I'd like to do that by SXSW so I can actually have a reason for being there.  I also want to gear it to metastatic patients, to give them some tips, ideas and things I've learned along the way.  I had a fabulous idea for how I wanted to structure it, but I no longer remember.  See goal above.

Mainly, I hope that everybody reading this is able to fulfill their own goals for the coming year. For those with cancer, I hope that the year is not filled with too much pain or sickness and your treatments are tolerable.  For those whose treatment has ended successfully, I wish them a worry-free future.  Remember, whatever is going to happen will happen.  All you can do is enjoy the day you are given, so try not to live in a place of worry.   For family, friends, and caregivers of cancer patients, I wish you strength.  It is not easy to watch somebody you love suffer but please remember that you must take care of yourself too.  I hope that acceptance and peace becomes part of each and every one of your lives.

If you have any goals for living with cancer, living past cancer, or living with a cancer patient, I'd love to hear them.

Have a happy, healthy 2015.  Thank you for reading me all these years, I'm truly honored by that.






Wednesday, December 24, 2014

Chemo-brained Christmas




I made it to another Christmas.  Good news indeed, but ungrateful wench that I am, I'm not quite feeling the joy and love I did last year.   This year I'm back to my traditional, "I hate those effing tree needles all over my floor"  rat race.    I no longer have the nagging feeling that it's my "last Christmas ever" that is so scary yet also heightens all things good and makes life seem poignant, as if you found a proper Instagram filter or are inside a Hallmark movie.  I guess it's good to know that you can go right back to your jaded, cynical, irritable self after living with advanced cancer for a while but still, a sprinkling of seasonal peace wouldn't hurt.

Maybe I should dip into the egg nog.

I do most of my shopping on Amazon (and for your own shopping pleasure, please use my affiliate linkto help me continue) but a few things I wanted to buy I could only get at a "real" store.  I also took my home-from-college son to buy gifts for his father and brother, lest they end up with Caltech tee shirts from the book store.   Shopping, whether online or in store, is crazy for me these days.  I clearly have a gift-giving disorder, exacerbated by chemo-brain.  Any mental connection from credit card to actual income is, for me,  as severed as a zombie head on the Walking Dead.

Long-time readers know that I have ADD.  I am one of those people who, on their way to accomplish something, walks past something shiny and gets distracted.  (Really.  Just now, I was going to take a shower, then walked past my computer, decided to check facebook for one second, then thought I'd start this blog post and opened up this tab to write it.  Now I'm remembering that I have to be someplace in an hour so I better get off the computer....)

...back.  My whole life is like that.  One pit-stop after the other.

I long ago figured out a way to live with ADD, and the big trick is to make sure those around you don't expect too much.  It wouldn't be a normal day for my husband if I wanted to go somewhere and didn't ask him if he knew where my car keys were.  Wherever I put them down, it has to do with whatever I was thinking about at the time, which could be anything from watering plants to taking a nap. And yes, he has bought me those beeper things that you put on your keys, and they really do work, until you lose the button pushing part of it, or it needs batteries changed and you have no idea where you put those for "safe keeping."

Chemo Brain brings on a different set of problems.   Unfortunately, after 7 chemos and all the antibiodies, painkillers, and whatever else,  I am experiencing some new kinds of cognitive dysfunction.  It definitely seems to be getting worse over time, and lately anything I want to remember just flits out of my brain seconds after it arrives, like a dragonfly on a pond.  Zip, zap, gone.   I cannot remember numbers, dates, what day it is, anybody's name including my own children.  I can't remember a single thing I wanted to remember almost immediately after I wanted to remember it, from something as important as making airline tickets to as minor as needing something at the store.  The second I think of it and get up to write it down - gone.  "Why am I standing here?"  It is very frustrating and happens all day, it's the norm for me now.  I keep thinking I should put a pen and mini-note pad around my neck and wear it that way, like Super Dork, but like my keys, I'm sure my special necklace would somehow end up in the fridge.

For that reason, I'd really hoped to get the Amazon Echo, and so put my name on the list to get one on the first day.  I thought if I could just say out loud what I wanted to remember without having to interface with anything, it might help. Unfortunately, I'm not one of the lucky ones who have been selected to give it a test and so my thoughts continually vaporize. Whether I could say anything out loud before I forget it is a question I may never discover the answer to.

That's not all that chemo brain has done to me.  I have some problems with word retrieval that annoys my family tremendously, and me too.  They all finish my sentences now because I can't think of the words.  I know my IQ has dropped about 10 points.  "Uh, um, uh" is now on the list of my most frequently used words as my mind desperately scrambles to come up with the word.  "Tweet" is a word I couldn't come up with today, and instead, my labyrinthine method of communicating somebody's interesting tweets was to say,  "You should read Neil DeGrasse Tyson's....um, uh, you know that popular thing, um, you know, the software, um, his twitters...."  As a person with a few twitter followers myself, I'm certainly aware of the lingo but my unfortunate sentence was said to a 17 year old so you can understand the reaction.  (A snort of laughter, a "you mean tweet?" and an eye-roller capper about describes it.) They haven't quite figured out I actually, literally have brain damage.  Of course, to a 17 year old, being in my mid-50s means automatic brain damage anyway.

The good news is I no longer blurt out the right answers if anybody is watching Jeopardy.  That kind of fact retrieval is now impossible.  Oddly, my brain still seems to function smoothly if I am typing.  I can get thoughts on paper with coherence.  But they won't leave my brain through my mouth without stumbling quite a bit.  This makes me quite nervous about SXSW, and I'm wondering if I can type my thoughts onto a screen instead of having to actually, you know...speak.

What does this have to do with Christmas?  "She's going off on a tangent again," you are thinking now that you know me.  Christmas was difficult this year with these new brain farts, because although I have always been disorganized and had minor chemo-brain I was not seriously forgetful.  I was actually quite good at my job, which required some higher level multi-tasking skills.   This year though, it is terrible, much worse, than before.   I have no memory of what I bought for anybody.  My curse is going to turn out to be somebody's blessing, for I kept thinking, "I haven't bought my son's fiance anything yet" when in truth, I had, I had just forgotten. I thought that more than 13 times.  She now has more gifts under the tree than anybody else.  Some of them, she'll even like.

A few things I don't even remember buying and was surprised myself when the boxes arrived.  One gift came for somebody, and I have absolutely no idea who I bought it for or what I was thinking and did I really choose that color?  I wrapped that gift and put a name on it but it is in a size nobody in my family wears.

Our family tradition is to open a present on Christmas Eve.  The gift has always been PJs and books, started when the kids were young to get them into bed and calm them while waiting for Santa. And, by the kids I mean me, my sister and brother - the tradition started with my mother, and I continued it.   We still do it although for many years it has expanded to include a gathering with my stepchildren and their families.

I spent five hours wrapping my mountains and mountains and mountains of gifts.  I turned on Radiolab, got the paper, the pen, the stickers, the scissors and the tape and dug in.  My back still hurts today.  But I forgot to keep track (although I had meant to) and by the end, by the time I put them under the tree, I could not remember what was in those packages.  Including those Christmas Eve gifts, which are buried ... somewhere.  Somebody is going to get a book and PJs on Christmas morning, I suppose.

I did manage to send gifts to those who could not be here. I think.  Unfortunately, my stepdaughter has a birthday a few days after Christmas, and I now cannot remember what I got her.  I believe she was caught up in the first whirlwind of Sephora shopping when the Christmas spirit was high, but who knows?  All I can hope for is that I don't buy the same thing twice.

The good news is I am comfortable enough to make a decision about next year's Christmas.  My kids are adults now and can handle the change in tradition:  This year, I'll take advantage of after Christmas sales, and I'm going to get a fake tree, one that doesn't drop needles.  

The ability to plan. That is my amazing, incredible gift.  Worth all the other stuff that comes with it.

ADD, Chemo Brain and Christmas - not a very good mix.  My pocketbook might be aching and my gifts all mixed up, but I did remember you all - another gift in my life -  and so the entire point of all the the above words was to say:

My very best to you and yours.  Have a happy, healthy Christmas (or whatever holiday you celebrate), and a safe and joyous New Year.


Wednesday, December 17, 2014

Survivor's Guilt

“Isn’t she supposed to be dead by now?”

I fear those words may be whispered behind my back as I go out in public.

It’s true. I couldn't blame the whisperers. I was supposed to be dead. I thought I would be by now too. So why am I not when so many others are?

I don’t know, and that leaves me confused, with no data to steady myself. There is no clean answer. How long do you have to survive past the posted prognosis before you become afflicted with Survivor’s Guilt? For one thing, you have to start to believe you might survive, and for me, that time is now.

In a funny way, it’s embarrassing to still be alive. I snap at people in anger, I’m bored, annoyed - I’m back to normal. I’m not living a beatific, grateful, Oprah-inspired life. People think somebody who has been through a trauma and lived through it should be Zen-like, but I roll my eyes, than feel guilty. I’m living an ordinary, messy existence. I don’t behave like a woman who is staring death in the face. I plan for the future, a year out, two years. I don't think twice making airline reservations.  I no longer believe I’ll die any sooner than anybody else; I don't live in three month increments anymore.  (I only get a routine scan yearly, a symptom has to appear for me to earn time in a machine.). I go to my oncology treatment every three weeks routinely now, like a rich women would do with her dermatologist. Just part of the schedule.   My husband and I just had a conversation about our Christmas tree next year.  A year ago, I wouldn't have discussed something that far off.

Is this all denial? Possibly.

In truth, you cannot keep up the fervor of living in a terminal state year after year, even if the menace has not passed. Eventually, the danger feels less immediate and you return to your normal self, and then think of all the people who never had that chance.  You feel guilty that you grump about the rain when other people don't get to, and a drop hits you and you grump again.

Survivor's Guilt is classified in the DSM IV is a “mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.”

That’s not quite right though. I don’t believe I did anything wrong in surviving – in fact, people with my same disease now look at me with hope that they can do it too. That’s a good thing. I don’t think anybody else would think I've done anything wrong, even the dead people, not that they wouldn't have wanted to be alive too. More accurate is my belief that others deserved to live more than I did. Better people than me are now gone; people who were funnier, who were kinder, who had more to give, and I’m still trudging along, bitching about how cold I am and slamming pain meds for my aches and pains. It is not fair, and I know it. Certainly, nobody could argue that a child whose life had barely started should have been allowed to live over me. I like to think I would have traded, taken on the suffering and death of a child so that he may live. But you don’t get to do that, so my noblesse oblige is meaningless, perhaps even a lie, pedal never put to the metal.

Mixed into the soupy cloud of guilt is also the thought of a broken promise. I played the metastatic cancer card often in the early days. Not like a gambler, calculating odds and trying to determine outcome, but like a new mother. She’s so in love with her baby that’s all she can talk about, and she’ll slap a phone full of photos in front of you at any opportunity. Her entire life is about that baby. Having metastatic cancer has that level of intensity, it drives your every thought for a long time. And so you mention it because it’s always on your mind and sometimes, you are sick and you need help. Sometimes, you just want understanding.  People, because they are innately good, play your game and even let you win.

Uncountable numbers of friends and strangers have brought over food, sent cards, given gifts to cheer me up, done special things for me over the past few years.  They thought they were cheering up a woman on the verge of death. Sometimes, of course, they were right. There were times Death got into bed with me, but he always found me wanting and left. So were their efforts worthwhile?

In a way, with Survivor’s Guilt, you feel like you have scammed people. You hear those stories about the women who pretended they had breast cancer and even shaved their heads to start a crowdfunding account, and you cringe. “Do people think that’s what I did?” You feel guilt without committing a crime.   Or maybe they think you didn't understand your diagnosis, and are, perhaps, stupid. Certainly, I've met a number of women who told me they had Stage IV cancer and in reality, had misunderstood their diagnosis (thinking a cancer cell in a axillary node was the same as a metastasis). Am I now in that group, people doubting my cancer had ever been in my liver or considered dangerous?  Do they think I was a drama queen?

What do I owe these people, those who were kind, those who may doubt? My death? It feels like that’s the right and appropriate payoff.

Guilt.

Perhaps somebody thinks I have the metaphorical "job on earth" that has yet to be done.  (If so, I'm guessing it's emptying the dishwasher.) In reality, I think chaos and medical science clash and the outcome is unpredictable. I got a good doctor who went above and beyond, I have a type of cancer that so far only wants to live in the liver, that didn't respond to chemo but does respond to Perjeta, and I was born at the right time to get these new treatments, ones that didn't exist five years ago, that now have extended my life into unknown territory. My doctor says I am an experiment, and he does not know and can’t predict what my future holds. He doesn't know how long I should be on this drug, what will happen if I go off it or stay on it – I’m a mystery, unstudied.  My doctor did a Hail Mary Pass by putting me on this drug the way I am on it.  The ball was caught in the endzone, and I'm doing the chicken dance - but the match is still not over.

Calling my own life lived and thinking it’s normal forever is a dangerous game. The Sword of Damocles still hangs above my head; to date, there is no cure for Metastatic Breast Cancer. Remembering that helps alleviate the guilt a little. Many of my friends have been NED and then relapsed, most of them actually.  That’s the name of the game with organ mets.

But I’m starting to know some who are NED….and who stay there.  Not only bone mets, but organ too, even brain.  It’s early yet, but I hope I’ll be in that group, a long-term survivor.  I'm starting to believe. I have already outlived the prognosis for a woman with liver mets.  If my choice is to be hopeful or doubtful, I am going to choose hope.

Still, guilt is now in the mix of emotions that consist of long-term survival. Hope, doubt, guilt, worry...all normal.  

When I wondered why I was the one to get metastatic cancer among everybody I knew who was diagnosed at the same time, I told myself, why not me?  It has to be somebody.  So that's going to be my answer when feelings of guilt rear up.

Why not me?  It has to be somebody.

Tuesday, November 25, 2014

Snippets Before the Holiday - Life with Cancer

Have you liked my facebook page?  I've been posting little snippets of my life with cancer there, and here is what you have missed:

November 24, 2014 - Cleaning for Thanksgiving

Why did I spend hours today cleaning my closet when I have guests coming for Thanksgiving? 

ADD, that's why. 

I'd decided to clean off my living room coat rack so people could use it, and one item hanging there was my sweater.  It belonged in my closet, of course, so I took it to my bedroom. I grabbed a hanger, put the sweater on it,  but had to jam it in, there was barely room in the closet, and I realized there were a lot of empty hangers taking up too much space.

Okay, I'll take them out, that'll just take a second. Then I noticed all those sleeveless, sheer things in there.  It's too cold to wear them this time of year even with a sweater so I might as well store them in my summer bin, which has been conveniently left on the floor of my bedroom. I began folding them, neatly. Oh look, so many sweaters are in the closet! I'd forgotten about them. They're all on the top where I can't reach, no wonder I forgot.  Why not move them down so I can access them? Maybe we can lower the heating bill if I have something warmer to wear.   I'll put them down on the low rack and move my skirts and things I wear less frequently up high.

Hmm....I also have more tees than I thought, which I rarely wear,  so I can put them in a dresser drawer to make more room.  Nice.  I have lots of shirts I can layer with the sweaters, but if I'm going to layer, I need to know what color everything is, so I have to organize by shade - which means everything has to be taken out of the closet and rearranged.  So, it all comes out and covers my bed, and since I bought a bunch of flocked hangers, all my clothing can go on those and nothing will fall off, so I take each piece of clothing and give it a new hanger.  Wow, do I have a TON of dry-cleaning hangers leftover!  Well, my husband can take them to the thrift store, I'll just bag them up. 

Suddenly, I realized I've been in here 3 hours and people are coming over and I should work on the living room - one of those people is a crawling baby! I look at the bed, which is completely covered in hangers and clothing and boxes.  I'm married, which means I'm at the point of no return.  I could certainly sleep under this stuff, but sigh, not my husband. 

Or my cat. 

I have to finish.

Five hours later - dust bunnies roam where my guests will be, but my closet is color coded, tops are hung by sleeve length and style, and everything is on the same type of hanger, facing in the same direction.  Scarves, tanks and hats are all in bins, and I found an old Gucci purse I'd forgotten all about. (An ebay purchase I suspect is fake and which seems to be peeling inside, and is that a bug?) 

Maybe I should serve dinner in the clean closet.....once I throw away the purse.

November 22, 2014 - Cancer Rant (edited)

I am feeling annoyed and stressed and it shows up as my being short-tempered with those who seem self-absorbed especially. And yet, here is a self-absorbed post. Go figure!

The pain is bothering me - nothing new there but it's probably because the weather is cold. I'm sick of the game of having to refill meds: call 24 hours in advance, then drive to get them from the doctor's office, take them to the pharmacy, pick them up, sometimes twice a month since they run out at different times.  The holidays make it worse because everybody is closed and you have to time it so you don't run out and the insurance companies don't let you refill even a little early.....it's annoying, but if I don't have my meds I am going to be in pain on a family holiday. Makes me feel like a druggie, thanks Feds.

Also:  I'm sick of being tired ALL.THE.TIME.  I wake up and want a nap.

I'm stressed because there is a lot to do before Thanksgiving with a crawler baby, and not much help. My husband is a very good guy but cleaning is not in his skill-set and he has to be told step-by-step what to do, which is exhausting. He is not a worrier but I am - could there be a pin on the floor the baby could get?  It's been 16 years since I had a crawler.  Plus,  I'm very behind on things I need to do (necklaces people ordered I wasn't ready for, they are 90% made but I'm too busy and behind to get them packaged, how CRUEL of me is that?) and I haven't started my Christmas cards yet,  and not only that....

..... the fact that I am in remission is not comforting me.

It is making me see life as way too long - I'm actually feeling ready for it to be over, like I'm done. Like the best years are over and now it's just difficulty.   I know that's ungrateful.  Am I going to live like this for years? What seemed wonderful and manageable now seems like a long, long road full of discomfort and trouble now that it's not ending quick. I know that won't go over well with many who have cancer and are doing poorly, and why should it?  But it's the way I am feeling on this day.

Yes, I want to see my older son marry and yes, I want to see my other son graduate college and watch my grandson grow up....but the space in between doing those things? Right now, it doesn't seem worth it, because I physically cannot do things to pass the time without pain and needing a nap. It is not fun not being healthy, I guess.  And cold, being cold is hard.

I have a new worry:  my husband's kidney function keeps coming back bad and now he has to see a nephrologist.  Well, that doesn't help me mentally. He is 11 years older than me and at some point, I may need to care for him, we always expected that. And that is going to be a sad story now as I'm not that great at caring for myself.  I know better than to jump ahead from a bad blood test to a serious disease, but because of our age difference, I do wonder what will happen if I don't die and he can't help?  Two sick people is one too many.  Our plan was for him to be sick but it's been me.  That's okay but how can it be both of us?

I guess this type of thinking is the adjustment from terminal illness to chronic illness.  What was joy at the thought that I had life left, years maybe, is turning into the realization that those years might not be great ones.

I should be working every day, we should be going out and enjoying our life, seeing plays and going to dinner, doing some traveling and all of that.  Now that my husband is retired and my son is in college, that was our plan. And, we can't.  Because of me, because I don't feel well, it's entirely my fault.

Don't I know better than most plans are an illusion? I do. But I'm still feeling that loss. It's a new one because I thought the loss was immediate but now it seems a long, slow decline.

This too shall pass.  My guess is it will pass the second daylight savings comes back.

I figure I will post it, as I think some people think I never have these days. And they are wrong. They aren't often; I love life, even diminished, even not the way I'd planned - but these negative days roll around for me as they must for everybody who has been sick for years. I'm not fond of whining but sometimes, you need to get it off your chest.

I KNOW I'm lucky, but I'm human.

November 20th, 2014 - Day after Perjeta/Herceptin Infusion

I'm in bed, bones aching, throbbing. I'm in a weird half place; not tired enough to sleep, not feeling well enough to get up to get to the painkillers. So I sit in bed and just...hurt. I look at my arm next to me and it's glinting. WTF? I have tiny pieces of glitter stuck in the wrinkles of my arm, sprinkled from wrist to shoulder, really, I'm just showered in glitter. It's not a good look. Beautiful, tan, round twenty-year old arms look lovely with glittered mica floating on the skin, but not 56 year old beef jerky skin arms; the glitter settles between mini-folds and the cracks of a hard life. Why glitter? It must have come from a Lush Christmas moisturizer bar that I slathered on last night. I didn't see or know that there was glitter in it, but it's sparkling at me today; winking at me. 

In summation, I'm in bed, sick from cancer treatment, smelling like cotton candy and glittering in the light.


Other Stuff

Don't forget to start here for any Amazon purchases you make this season. I am an Amazon Affiliate, which means I get a small percentage of the things you buy. All you have to do is start your shopping session from my blog and anything you end up checking out, I get 4 to 6% of the price. It has been a great help over the years.  I do have an affiliate box on the right or you can use the link in this post. That's the main way I make "money" from this blog (actually, I get Amazon gift cards that I use on Amazon that my son has access to if he needs anything in college) so it's helpful and costs you nothing.

If you haven't found me on facebook yet, please find me and hit the like button.

If I am not able to post before Thanksgiving, I hope  you have a wonderful day, full of food, family, football and whatever your tradition is.   I know I will - my youngest son comes home from college tomorrow.  I cannot wait, and if allowed, will throw a photo or two on facebook.