The Art of Cancer Survivorship

Ok, fair warning, this is going to be a long post.  It's been an eternity since I last posted.  I've been meaning to update this for awhile, but nursing school has a way of running your life.

So here's a quick little update.  I started nursing school last September and I'm about 2.5 months away from starting my consolidation.  In other words, I'm nearly done school for good.  Famous last words right? No, but seriously, this time I swear.  I'm done.  To make a long story short, nursing school is a tough gig.  12 hour shifts on top of going to school full time is no joke.  I love the hospital work, but could do without nursing theory and endless useless papers.  Oh well, the countdown is on.

My MRIs are now every 5 months.  Mixed feelings about this.  I think having MRIs every 3 months would be perfect and would seriously decrease my bipolar episodes around scan time.  The very good news is that they've pushed my MRIs out because I'm stable.  I never thought I would love the sounds of one word so much in my entire life. Stable. Let's say it again.  Stable.  I don't really have the words to express how relieved I am.  I'm grateful. Well, that's an understatement, but you catch my drift.

Now, I'm friggin' angry.  Being a cancer survivor is not what I thought it would be.  It's hard, it's exhausting, and at times, it can be downright miserable.  I think as a 'survivor' people assume you should just be thankful you're alive.  Why yes, thank you ever so much for pointing out that I'm not dead.  As if I don't know how lucky I am.  But the thing is, it's really not that simple.  When you're healthy, you want time to slow down.  There's never enough time.  When you're sick, it's the opposite (well for me anyway) - you want time to speed up.  You want to hurry up and check everything off your list, because you don't know how much time you have.  I'm guilty of that.  I'm anxious.  Nervous.  I don't want to miss anything  What girl wants to miss their wedding day?  Another thing.  Once you're finished treatment, people think life just goes on and that you're fine right? Wrong. It's so much harder now.  The thought that my time might run out, never goes away.  There's not a day that goes by where I don't think about cancer.  Subconsciously or otherwise.  Cancer does not define me, but it is forever part of who I am.  There's a quote that goes something like...cancer is this dark cloud that follows me even on the sunniest of days...  The more you put your life back together, the more you have to lose.  And it could all go. One single god damn scan could change my whole life.  I often wonder if I would change having cancer...and it's a tough call.  Would I give up Colin and my puppy?  Truth be told, on those dark days, I would.  I would... to have my old life back.  And somedays, I know I'm where I should be.  It's a weird thing to be thankful for cancer...

In other news, without making this post over 20 pages long, there has been some issues around my fertility and chance to have children.  The chemo I was on does affect fertility, but luckily it appears that I have sustained little damage to my ovaries. Way to go ladies! Damn right.  However, here's the kicker.  Because my situation is so high risk, its advised that I should not carry my own children.  Of course every case is different, but in general, brain tumour survivors should not get pregnant.  After consulting with a fertility team and my oncology team (is there an award for having the most specialists ever?), ultimately the decision is up to me.  Right, as if there is a choice to made here.  I'd be putting my life at risk to have children the good ol' fashioned way.  The physiological changes the body undergoes during pregnancy can affect tumour reoccurrence in ways we don't understand yet.  Could some researcher please get on that?  Now, I could get pregnant and be fine or it could come back.  So, what would you do if you were me?  Although, things may change...it's easier for me to put myself in a place where I have to try and accept that I will likely never carry my own children.  And if by some miracle that happens, well then, it will be exactly that...a miracle.  But, I'm downright pissed.  I'm angry, and sad...it's painful...it's a loss that I don't quite know how to wrap my head around.  How do I be ok with that?  Or maybe you never are... On top of everything else...my ability to cope is a little tapped out.  Ok, maybe more than a little.  I cope by ignoring it.  And when I do think about this whole mess...I end up in tears...Sometimes everything seems unfair. Why is what seems so natural for others, such a fight for me?  How do I cope with close friends who will eventually have children of their own?  Will I be able to share their joy?  Or will I just be bitter and angry at cancer for taking another thing away from me?

Deep breathe.  For those that know me, you know I'm generally a happy, positive person.  So...how do I get through? I don't really know...I guess I just focus on the things I do have.  Let's list them because it will make me feel better.  I'm a good Mother to Ryder, I'm a good daughter... I'm a freakin' amazing nurse...I think I'm a pretty good friend...and I try to be a good partner to Colin.  For without him or my family, I would have never made it through this.  And Colin, if you're reading this, I want you to know that you're my fairytale, and no matter what the future brings I love you with all my heart.  And even on my darkest days, I know everything will be alright because I have you.  To my parents: Your strength, tireless love, and endless support have made me the person I am.  Words cannot express my gratitude and love for what you both have done.  And of course, last but not least, my dog Ryder.  I know everyone thinks their dog is special, but Ryder is not just a dog to me...he saved me.  Getting a golden retriever puppy had been on my bucket list forever and I got him in the midst of my treatments.  He went through a year of chemo with me, made me walk when I was tired, never judged, and was loyal in a way only dogs are.  I was so busy looking after that puppy, that I didn't even have time to think about cancer.  Probably a good thing.  Ryder, you are one of the most precious things in my life.  Thank you for keeping me well.    

And so, cancer survivorship is an art.  It's work.  It takes practice and it's not by any means easy.  And sometimes I friggin' suck at it.  But, I am still here.  And despite everything...I look around me and deep down I know my life, in some twisted way, is perfect, and worth living the shit out of.

How To Talk to Someone With Cancer

As the holidays approach, here's what your friends with cancer need to hear -- and never want you to say

BY MARY ELIZABETH WILLIAMS

The holidays can be a social minefield under the best of circumstances. It’s as if, in the last two weeks of the year, all the dramas of the past 12 months get together for one last hurrah. Now, add to all that the eminently likely scenario that someone you know has been diagnosed this year with cancer. How do you interact with that person now — not just over the eggnog at that caroling party, but from here on in? What do you say that’s genuinely helpful when the whole situation is freaking you out?

I know that it’s hard for you too; I really do. In addition to dealing with my own Stage 4 melanoma, I have in the past year watched one of my best friends endure an astonishing roller coaster of ovarian cancer, and lost a family member to stomach cancer. It’s no picnic loving someone whose life is on the line. But you’re not helpless. And if you’re wringing your hands wondering how to handle yourself, Cancer Lady is here to offer a few simple guidelines. (And lest you think that people with cancer never trip up socially, au contraire. I’ll be back tomorrow with an etiquette guide just for them.) But first, let’s talk about you, friends and family. I’m sorry you’re going through this. It feels overwhelming and complicated. But it’s not, I promise. When in doubt about how to behave, stick to the basic rule of thumb that a) It’s not about you, and b) It’s about them, you’ll be golden. Let me expand.

Rule 1: This is a bad time to be emotionally needy.

This is going to kick up all your issues. Trust me, I have cried my eyes out during a whole lot of car rides home. So go ahead and bawl, and complain loudly to your private support network. You can  certainly be honest with the person with cancer about how ticked off you are that this happened. But remember that it’s not her job to make you feel better about anything. People with cancer have got plenty of their own fears going on – they don’t need yours. That’s why the relative who called me after my initial diagnosis to insist, “Tell me you’re going to get better. I need you to say you’ll get better,” is the person whose calls now go straight to voice mail.

Rule 2: It’s a very bad time to disappear.

You say you’re not good with hospitals, or you’re sensitive because of your tragic family history, or this is really inconvenient because you’re going through your own problems right now? Yeah. Suck it up. I recently had a now ex-friend say, after a year of near total silence, “I’ve been thinking of you so much.” And if I’d been a mind reader, that might have meant something.

It doesn’t take big gestures. It takes less than a minute to send an email or a text or pick up the phone or walk over to someone in the supermarket and say, “How are you?” That’s all it takes to let someone know you’re still on her team. And that minute can be the difference between a miserable, scary day and feeling supported and reassured.

Rule 3: Someone else’s dramatic life event is not your opportunity for closure.

If you think this is a good moment to crawl out of the woodwork to say hi to your ex- with breast cancer or express a few things you wish you’d said after a long ago family falling out, it’s not. And if you insist on reaching out to someone who is otherwise not in your life anymore, be holding a nice big present.

Rule 4: Remember it’s a fine line between curiosity and finger-pointing.

I don’t know anyone with cancer who hasn’t heard a version of, “Did you smoke? Did you sunbathe? What happened?” To people with cancer, this sounds an awful lot like, “Tell me how you screwed up so I won’t make the same mistake.” Similarly, don’t bother telling them about how Louise Hay would say this happened because they thought bad thoughts, or how they’ll get better if she just has a positive attitude. Cancer happens to Marlboro-devouring rock stars and it happens to little babies. So keep anything that sounds like blame to yourself.

Rule 5: Similarly, don’t tell them how to fix this.

Whether they’re doing intensive chemo or copper bracelets and colonics, remember that’s their choice. If you’ve read of a promising trial or know the best specialist in the field, you can ask if they’d like the info. But don’t tell them that they have to move to the country or go macrobiotic, Helpy Helperton. Don’t even, in fact, tell them lame things like, “Take it easy! Get some rest!” Because unless you’re coming over to clean the house while they get in a nap, you’ve basically ordered them to do something else in a likely already full day.

Rule 6: Don’t be hasty with the best-case scenarios.

People with cancer appreciate your positivity and encouragement. They don’t need someone not standing in their shoes to make sweeping pronouncements about the future. They might not appreciate your vision that “we” will “battle” this. (Fun fact: plenty of people with cancer hate the word “battle.”) And if the prognosis is bad, they don’t want you to tell them that no, it’s not. I hate to break this to you, but here’s the thing about cancer – some of us are going to die. Not because we’re quitters, but because that’s how it works. If someone with cancer is telling you that, shut up and hear it.

Even if things are going well, let it go at its own pace. I can’t count the number of times people have called me a “survivor” or said things like, “So, are you cured?” This happens a lot to those of us in the club. It makes us feel a little rushed here. Like you’re so eager to wrap this thing up and move on already.

The era when a person might get cancer and then either promptly get the right treatment or be dead within six months is over. People go through varieties of treatments before hitting something that works. They are declared “clean” and then are rediagnosed. They live with their disease for years on end. Please, be patient with them.

Rule 7: On the other hand, don’t be a downer.

You don’t need to quote harrowing statistics right now. Or mention your neighbor who was in so much pain at the end. I say this because people have pulled this crap on me. If that’s your idea of small talk, you really need to pick up some other conversation points. And know that being sympathetic does not mean telling people that you don’t know how they’re possibly coping right now (hint: they don’t have a choice), or what a grueling ordeal it all must be.

Rule 8: Your Aunt Betty’s cancer is not all cancer.

Cancer is a wide, wide world of diseases that behave in unique and specific ways. Nobody expects you to be an expert. Just bear in mind that your prior knowledge may have absolutely nothing to do with anybody else’s situation. Not everyone with cancer gets chemo and loses hair and throws up a lot. Not everyone has surgery. Not everyone gets that miraculous drug. Go ahead and ask what the treatment is before authoritatively assuming your friend ought to be bald by now.

Rule 9: Be useful.

This does not mean calling up and saying, “I wish I could do something,” or worse, promising, “I’m going to baby-sit the kids or make you dinner” and then never doing it. This is not your big chance to feel pleased with yourself and your good, empty intentions.

So use your ingenuity — and don’t wait around for a request. It’s not that the person with cancer is necessarily shy; he or she may just be a little preoccupied lately without having to come up with errands for you run. Bake a potpie. Or knit a cool hat. Or ask, “Do you want to come over on Tuesday and watch a movie?” Specificity is good. The words “sometime” or “tell me what to do” are not.

Rule 10: And this is the most crucial – be guided by the person’s cues.

Some people will gladly tweet updates from their chemo treatments. Some will demurely prefer not to talk about it. Respect their limits — it’s their cancer party, and they get to call the cancer shots. You don’t have to cure anybody. You don’t have to cheerlead. You don’t have to do very much at all. Just be a friend. Just stick around. Just let them know they are not forgotten even if they’re not around as much lately. They are not scary because they look different. And that if they can handle this, you love them enough to handle this too.


Amen Mary. Amen. Preach. 

Audios 2011!!

It's the holiday season (Mother Nature, would it be so hard to give us some snow?), and it's that time when people reflect on the past year.  So here are my reflections: 1. 2011 was the year I got brain cancer. Go me. 2. I have an amazing family - immediate and extended, 3. I love my Ryder puppy, and 4. I have some (key word) shitty, shitty friends.

Now number 4 is probably one of the hardest lessons cancer has taught me.  It may seem harsh.  But that ladies and gentlemen is the truth.  Let me explain.  First of all this makes me angry.  So angry in fact that I could just punch someone.  I've learned that in times of crisis, you learn what people are really made of...who they really are.  And I'm not sure I like what I see.  I've read countless cancer survivor stories, and there's a common theme:  Every single one of them learned the true value of friendship, and were forced to re-evaluate the people in their lives and their priorities.  And it's no different for me.  The people I thought were going to really be there for me weren't, and then there were those people who came out of the woodwork, surprised me, and stepped up to the plate.

So dear friends: While I respect that everyone deals with a cancer diagnosis differently, I don't think asking for friends to be friends is all that much to ask.  I'm not asking for people to drop everything for me, to come spend every waking moment with me, or anything else completely ridiculous.  Just be a friend you know?  I also respect that people are busy, and maybe cancer isn't on their radar.  Completely fair.  But cancer is on my radar, and that deserves equal respect.  And my point still stands.  Life is about priorities, and I've learned that in some cases, I'm not one of them.  I guess you can't control the choices people make right?  And if those people aren't going to show up, then ditto baby. Ditto.

For instance, how many of my friends really, truly know how I'm doing? The answer to that would be 2.  Maybe some people think because I'm done chemo the race is won? Well it's not.  Here's some cancer fun facts: I'm more terrified now then I've ever been.  I have to figure out how to live with cancer... and what I'm learning is that it's damn tough...I'm only 26.  No I'm not dying today... but I also would prefer not to die young.   Sometimes I still get angry over the whole thing...like sit on the shower floor and cry kind of angry.  Sometimes I get so tired of constantly having to rebalance my life. Sometimes I want my old life back so badly it hurts.  Oh, and it's likely my cancer will come back.

If you ever have a friend that faces a crisis, my advice would be to be there. Really be there.  Let that person know you're in their corner.  That you have their back.  Hell, sit down with that person and tell them exactly that.  Actions speak louder than words.  

To those people that have really been there, and stepped up, I'm so so grateful for you and I love you.

Another question for the masses: Do I say I have cancer or I have had cancer?

Update: First post-chemo scan is Jan. 21st.