Be awesome when your friend has cancer

"Don't Be a Jerk When Your Friend has Cancer," recently posted on Elephant Journal and re-shared by my friend and writing teacher, Susanna Harwood Rubin, provides 6 practical tips for friends of cancer patients, 6 tips to avoid jerkdom.  Danielle Foushee, the writer, is an artist and yoga teacher who was diagnosed with thyroid cancer in November 2011.  Look at her art on her website.  She's seriously awesome.

But her friends are assholes.

While I really appreciated her post, it also made me a little uncomfortable and sad --  because it brought up unhappy memories and also because I wished less anger for Danielle and more comfort.  And much better friends.  From the sounds of it, her friends suck.

Her six tips are (and please don't use this as your excuse not to read the original piece.  Click through the link above and Like -- give her some support, pretty please.  After all, as above, her friends are jerks):

1. Never say "If there's anything I can to help..." and leave it open-ended.
2. Don't make empty promises.
3. Don't run for the hills.
4. Don't disappear.
5. Don't dwell on the negative.
6. It isn't all about you.

As my husband's caregiver when he went through the horrifying process of diagnosis with lymphoma, followed by chemo, I learned a ton about friendship and love.  The diagnosis rocked us to the core, exploded the life we thought we had and put us on a totally unexpected path, one we never, ever would have imagined ourselves on.  He is the healthiest, strongest, fittest person around (ok, except maybe for other guys on his cycling team, Iron Data Thirsty Bear).  WTF, right?  It took some getting used to.  It took some adaptation.  But we figured it out.

And here's the deal: our friends were AWESOME through the whole process.  Sure, not everyone knew what to do, and once I got the hang of it, it got a lot easier.

Cancer is code for death.  That freaks most people out.  So they may want to help but they also don't quite know what to do, how to react, how to be of service.  They need structured guidance.

It really helps to be specific about what you want.  It helps even more to have someone do that for you.  Someone like me, obvy, but that's a whole other topic.  I can't imagine how anyone gets through a serious illness, let alone cancer, without a clear-eyed advocate on the sidelines.  But even I had moments of making it about me.  

The problem with cancer though is that it doesn't color in the lines.  If you're near it, it gets on you.  It IS about you, even if you're not the one with the tumor, but you have to keep that in perspective. It's challenging.

Here's my list.

Be Awesome when Your Friend has Cancer

1.  Don't Wait to be Asked.  If you have an idea for something you want to do, no matter what it is, Do it.  If it's making an advent calendar marking every last day remaining til the end of treatment, like our sweet friend Nancy did for Joe, cutting out pictures from magazines to cheer him, finding words to inspire him, then do it. Handmade things are super meaningful all the time, but especially precious when someone is suffering and can see that you worked for weeks on your project, holding him or her in your heart in the entire time.  This was super awesome when Nancy did it because she had probably met Joe all of once, if at all, before she came over to deliver this beautiful gift.  Awesome, right?  But if you're handier with a credit card than scissors, go for it.  We were so grateful for certificates for catered meals or packages of the world's best mac and cheese from Seattle (props, Sheri and Hilary).  Don't hesitate. Do!

2. Offer to Set Up and Manage a Meal Calendar.  Bringing food is an essential expression of caring, something most people are capable of doing.  But a person who is undergoing chemo shouldn't have to coordinate the comings and goings.  There are plenty of websites that make it easy, so Google it and go.  Not only does this take pressure off the caregiver to shop and cook and fill the fridge, but it's just a really great thing for the patient to look forward to, plenty of variety to keep things a lot more interesting than they might otherwise be.

3.  Keep Your Stories to a Minimum.  It's human nature, as a way of empathizing, to tell your stories of cancer to the patient, to talk about all of your brushes with death, all of your hospitalizations and illnesses.  But check that impulse and keep your stories to a minimum.  Talk about other subjects, not just illness, and try to keep the focus on entertaining your sick friend, making him or her laugh or light up about something, a shared experience, a future plan.  Try not to talk excessively about yourself.  After all, right now you're not the one with no hair, with the sallow face and sunken eyes or the chemo hiccups.  Ask questions.  Listen.

4.  Pick Up the Phone.  Some people told us after the treatment, when Joe was up and back to his usual self, that they hesitated to phone while he was sick, having heard about his illness through mutual friends, because they didn't want to invade privacy or presume.  Just pick up the phone.  It means the world to know that people are in your corner, regardless of how they heard you were sick.  Those expressions of caring go a long way to buoy a person's spirits.

5.  Visit but Not Forever.  People who are sick are just that: sick.  Their stamina is less than yours.  Plan a visit that lasts 60 minutes, for example, and then LEAVE.  Don't hang around forever.  That becomes exhausting.  Really, it's better to have two shorter visits than one really long one.  Come back again!

6.  Do Your Crying At Home.  This is key, something Danielle is talking about under her #5, Don't Dwell on the Negative.  Cancer is super-scary and super-sad, but please try to come over with a happy face on, having cried your eyes out at home.  It is really hard for the patient to have to comfort others over his or her current state.  Please bring joy with you when you come.  There's enough darkness and fear as it is.

It's so crazy for me to think that it really was two whole years ago.  Behind me, in the office, Joe is doing his interminable exercises right now, part of his PT for a cycling accident last March when a car turned in front of him, leaving Joe with a totalled bike, 4 broken ribs, a broken scapula, a broken clavicle and a punctured lung.  It's hard to remember that it wasn't so long ago really that he was so wan in color, always with a hat on to cover his cold bald head, always nauseous.

But not totally miserable. Because he had friends around (and family, naturally, I'm not leaving you out).  Good friends who found ways to show their caring at a time when it was most essential.  Friends who were awesome.

Don't be a jerk.  Be awesome.  It's so easy!

XX

death: I hate you even more than cancer

I am not done.  Yep, still grieving over here.  If you tuned out for a few months and hoped I'd be done when you got back, bad news: Nope. Still heartbroken.  Still lonely. Still purposeless and adrift without the tether of my beloved four-legged best friend.  Still really and suddenly and constantly sad.  

I have spent about the last four hours soaking every available tissue with buckets of tears, just miserable over the loss of Jasper, over knowing I'll never lay eyes on his 3D self again in this plane, although I see him frequently in my dreams.  And I know it's completely idiotic to hate death, of all things. But I'm serious: I'm not going to pollyanna or sugar-coat this or say it's not my favorite.  I'm going straight for hate on this one.

Thanks to death and his bullshit, I am convinced that I'll never be truly happy in any kind of lasting way again.  Ever. 

That's crazy, right?  You can go ahead and say it.  You can go ahead and tell me I'm depressed, too, if you want to.  My only response to that is that yeah, DUH, of course, I'm depressed.  Obviously. 

But how not to be?  How depressing is it, really, that someone you love so much can exist, be doted on and touched and snuggled up and sung to for almost fourteen years, and then just vanish, just disappear?  How is that possible?  Believe me, I know intellectually how it's possible, and I can also tell myself a whole story about how he has just returned to the source, his molecules dissolving, reforming, etc., but it doesn't do anything for my heart.  My heart doesn't give a shit about any of that or about the rainbow bridge.  It just, I just want him back, I just crave a rewind of the last fourteen years of my life to any point in that timespan that had him in it, wagging, running, smiling with his entire body.

At least I never, not for one moment, took any of my time with Jasper for granted.

Used to be that it was cancer I hated with a vengeance, cancer who in one year grabbed Alex, and my sister, and Jasper briefly, then my Joe.  Cancer with its miserable darkness.  But death?  Hate it even more than cancer.

I know, I know that's silly.  I know I need to accept what is.  I need to square myself to what is.  But there's such a big part of me that sometimes just doesn't care, that doesn't see any real point.  And oh yeah, that big part that doesn't see the point?  That's my heart, the big broken part of me, the part that just can't right now do anything but grieve.

This is not a cry for help.  Don't be gross.  This is just me, keening, deep in my piles of sodden kleenex.  I get to do this, having lost someone I loved so much.  I suppose this is what happens when you love really big.  The pain of loss is equally big, expanding just like the love did, until it too vanishes, disappears beyond where the eye can see.

Miss you, miss you, miss you, Mr. Pillowsticks, sweet sweet Mr. Brown, Sharbles, Baby Cakes, every moment, every day.

Really, Moleskin: so bogus that you cause cancer...

I was just shopping for a 2011 notebook on Amazon.com and was about to put a replacement Large Squared Notebook in my cart when I noticed these words, California Residents: click here for Proposition 65 warning.  Since I've always bought my Moleskin in a stationers, I'd never seen such a notice before.  Really not happy to read the following:

WARNING: This product contains a chemical known to the State of California to cause cancer, birth defects or other reproductive harm.

God damn it, the cover is PVC.  That makes me so mad!

The Moleskin has been my go-to for years.  It offers so many excellent qualities: the weight of the paper, the way fountain-pen ink looks on the page, the binding and the way it lays flat when you open it.  Plus, the Large size is just perfect to carry everywhere in my hand or in my bag.  Perfect.

But no more.  

So now begins the search for a replacement notebook that offers all of the qualities I love about Moleskin without the cancer-causing chemicals.

Maybe everyone knows this already and I'm the slow-poke at the back just figuring this out, but damn it, I am so disappointed.  Thank goodness for California, otherwise I wouldn't even know.

Really, Moleskin: could you please get your shit together and do a little better than a PVC cover?  I used the Contact Form to ask them when they're planning on replacing the cover, letting them know how disappointed I am. Alternately, their email is info@moleskineus.com.  In case anyone else is interested in sending a good old fashioned letter (which I'll be mailing tomorrow, thanks), here's the address:

The European Paper Company
MoleskineUS.com
4775 Walnut Street Suite C
Boulder, Colorado 80301-2579

I've already received an automated reply to my email.  Fingers crossed that they have something great to tell me, like they're changing out the covers...  Oh Pollyanna, what will you take notes in now?

The final word on the PET scan?

I got the call this morning that I've been bracing for. Unfortunately, every time Joe calls me lately, I am instantly in a panic, wondering if this is The Call -- the call that contains the final information on the PET scan, which is really the final word on his lymphoma (oh jesus, please let there not be something else, not more chemo and suffering and pain). It's a drag because instead of feeling my usual total joy at hearing my sweetheart's voice, there's also this spike of nausea and anxiety.

But I think I can be done with that for a while.

The ENT doctor (Dr. Chien, love his name) called to say that he had indeed spoken with the radiologist about Joe's last PET scan. For those readers just joining the saga, we needed to make sure that the little Something on Joe's right tonsil wasn't some residual uber-lymphoma, power cancer, that survived the chemo scorched earth treatment.

The radiologist said that the Something was nothing to worry about. In a regular person, one who hadn't had lymphoma, he wouldn't even mention something like this when reviewing the results of a PET scan. In a normal person, not even worth mentioning. It's nothing to worry about, he said.

So Joe's not having his tonsils out, and we're trying to get comfortable. We both wanted news that would make us jump around and shout and laugh and cry and schedule a big party, but I think we're still a little stunned - not feeling exactly elated, not feeling exactly devastated, either. Perhaps just another aspect of our shared Post Cancer Stress Disorder which I assure you is very real and present in us both.

But really, even though we're stunned and not sure what or how to feel, I know that it really and truly IS good news. Once cancer has invaded your life, it's hard to feel safe, get comfortable. But I know this is good news. I just can't quite exhale yet, even though I know it's coming.

We will have a party. We will jump around and shout and laugh and cry. It might just take a little while.

BIG LOVE TO ALL.

Cycle 1, Day 4: Cancer is a full-time job

The lovely Susan Jones, Joe's nurse at chemo, made us a calendar that details Joe's meds and doses, day by day, morning and evening, for this first week of Cycle 1. I love this calendar so much, not least of which because it's handwritten and I like how her handwriting reveals her upbringing in Holland, but mostly because without it, it would be so much harder to remember everything. It's got almost a totemic quality for me - I look at it and Susan's kind instructions are with us, filling me with calm.

It's 8:45 on a Saturday morning and Joe has gone back to bed. Normally, he'd be suited up and out on his bike with his buddies already, long gone out White's Hill after the meet-up at the Hotty Hut in Fairfax. But he's really tired today, so there he is, sacked out on my side of the bed. He was up just long enough for a bowl of cereal and some coffee, two Prednisone, 1 Zofran and 1 self-administered shot of Neupogen. Normally, I'd be at yoga, in a packed room in Sausalito with my friends, chanting and laughing and sweating and turning upside down. But I'm really tired today, so here I am on the couch instead, thinking about how much our lives have changed so quickly.

We both know that this treatment is short-term. Joe's chemo will be done in the first week of January. But right now if I ask him about it, he just says, "it's going to be a long haul." He never believed that chemo would affect his appetite, but for the last three days he's been largely unable to eat and tending toward the bland -- mac & cheese is really what he wants. It was a small triumph that he was able to eat a Michael's Sourdough #23 yesterday at lunch, at last something that was appetizing and didn't make him sick. And like I said, he's in bed right now on a blisteringly beautiful sunny September morning - that's all wrong!

It would be so easy to let the cancer take everything over. It is, seriously, a full-time job. It's such an interesting situation -- cancer forces a contraction, a pulling-in to hoard energy, a narrow singular focus on pills and survival, in the face of which I keep pushing for expansion: how can we grow from this, how can we get stronger, where is the Good? The answers to those questions are obvious, right, but still the pressure to contract, to get small just to get by, is so strong. If it's a full-time job, damn it, then we're getting paid for it -- paid out in love and the sweetness of simple things (eating a whole sandwich!).

Just now I heard some rustling down the hall and Joe just appeared in his kit, out to try a ride. Who knows what will happen, but we're going for it anyway, always expanding, getting bigger no matter what.