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', 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.


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.