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

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 6, Day 5: The Cure for What Ails Him

It's a gray day and Joe's been feeling pretty crappy. We went for a leisurely amble with Jasper this morning on the levies near McInnis Golf Course. So glad we had down jackets on and gloves -- brrrr! After a few hours of napping and feeling generally miserable, Joe is now back on his feet and outside, doing something he loves: screening finished compost.

This is always a gratifying experience, checking out the worms, smelling the freshness of the dirt, appreciating that all that glorious soil amendment is the product of a natural process of decomposition for which we simply manage the conditions. Right now, it's even nicer for Joe, a great way to balance out the residual effects of super-toxic chemo and settle the mood swings of the prednisone.

There's real solace in the compost, too, actually. It's pretty hard not to be optimistic, not to be excited about the future, not to feel hopeful, when you're elbows-deep in fragrant new soil, dreaming of next spring and summer, what will we grow, what will we eat. Even in the darkest and coldest part of winter, the compost reminds us of what is coming, letting us feed the ground now so that it may feed us later. A little hit of summer sweetness even on this gray day.

This is delightful every year, but especially heartening right now, such an essential part of Joe's own springtime return. :)

Cycle 6, Day 3: The bounty of friendship, another gift of yoga

After walking with Jasper at the levies this morning (big tide rushing in, harriers trolling for their breakies), I sat with Joe by the French doors in our room for a while and watched the busy-ness of birds outside. Joe had a bit of a rough night, feeling very weak today and funky, but nevertheless left for work around 8:30, which is late for him. Not sure how long he'll last there today, honestly. Even though it's the last time, it might be the worst time, his poor body weakened by all of the chemo and side-effects that came before. Hanging in there...

I continue to be amazed at the kindness and love of the beautiful people we are so graced to call friends. Last night, darling sisters Alexandra and Gillian brought us an enormous pot of delicious chicken soup tied with a red bow, warm, delicious garlic bread, fresh and delicious zucchini bread. And a handmade sweet card. We were all delighted and dazzled by their presence, so moved by their generosity and unbelievable cuteness.

Besides the sheer delight of their presence, just how lit-up they each are, what's so awesome about it, for me, is that I only met these two lovelies in April of last year, when we had the good fortune to meet and spend a week together at Laura's retreat in Careyes, Mexico. For me, it was love at first sight, in that way I've grown to expect through yoga, that the people I meet through the practice become my fast- and heart-friends. I would do anything for them and know they would do anything for me. It's as if we've always known each other, because we see and know the truest thing about each other from the very beginning. Until last night, Alexandra and Gillian had never even met Joe, but still they came, bringing all that love for us to eat.

I never expected this, to meet such wonderful people through Anusara, to rest back into the arms of such a warm and loving community of yogis and yoginis, to be so very loved and to love so very deeply, so very madly, all these new friends all the time, every day.

The gifts of yoga are so much more than flexibility, handstands, peace of mind -- all of that is wonderful, but what is the real gift, the biggest joy, is this super-connectivity to others. I am so grateful to our teacher, Laura, who creates the conditions in which these friendships burgeon and flourish, Laura who consistently inspires each of us to see the good, the light, the beauty all around us. Through these glorious friendships, I touch the One-ness of which we truly are a part. Thanks to these lovely friends, I am reminded every day, on the mat and off, that Love is all that matters, the one and only real purpose of our time here on this earth.

XX

Cycle 4, Day 14: Gray Area

Behind today's door on the "Advent to Freedom" calendar that Nancy made for Joe, is a small cartoon of Keith Richards and the words, "ROCK IT!" We are doing our utmost to do just that, rock it, rock this whole cancer bullshit.

Today Joe finally heard from his oncologist about the results of the PET-scan. [I, of course, regret not having been on the call since my insatiable urge to take notes has therefore gone unmet.] Overall, the results are positive. The doctor was pleased.

But there is still Something on Joe's right tonsil. Those who've been following all of the gory details may remember that the first PET-scan, before Joe started chemo, showed spots beyond the big tumor in Joe's abdomen, one of which was on the right tonsil. That stubborn little bastard is apparently still hanging on.

Some good news: Joe will only have 6 rounds of chemo. Had the results of this PET-scan not been this positive, there was a chance of extending to 8 rounds. Joe was really clear that he would cry for two days straight if he wasn't done after 6. So that's some consolation.

And we're hanging on to how positive Dr. Maloney was on the phone to Joe.

But there's that Something.

After the chemo is finished, Joe will see an ENT to explore what's going on. The doctor today mentioned a biopsy.

So it's pretty gray, this zone we're in right now. Not 100% positive, and sure not 100% negative. But gray. And a little scary.

Last time Joe had chemo, the lovely nurse Susan told us how some people really only realize the full horror of what's happening to them when the chemo is over, and then they have something akin to post-traumatic stress disorder. When they aren't preoccupied with the poisoning of chemo, with the side effects and getting through them, then they have to deal with the emotional side of it.

With this news today, I do feel like we're in a different stage, one we didn't fully anticipate. I think we were really expecting 100% good news from the PET-scan. I didn't budget enough reserves for the fear that this latest sorta-news would unleash for me, for the scariness of this gray area.

We're still rocking it (thanks, Nancy, for the daily inspiration and reminders of your love), but god damn, we'll be so glad when this is over with.

Cycle 3, Day 9: Woe and Courage

I've been remiss in describing the first week + of this last treatment, so this is going to be a longish post.

Based on our experience with the first two rounds (Joe felt crappy but still worked and rode his bike), I think we mistakenly believed that we would skate through Chemo, trip lightly through this landscape of poison and side effects. To say we've had a rude awakening is understatement. The last 8 days have been very hard, 1 in particular was the hardest day we've lived through in our more than 20 years together. And throughout, we are cataloging Joe's symptoms, something which is challenging for us even in the best of times.

Way back when, I used to joke about keeping a calendar of Joe's ailments, what happened to him at work or on the bike. For a month or so in the late 90s, I actually did mark everything down and we'd laugh about it. Little did we know what good practice that would be for Right Now. Honestly, up til August of this year, there was already PLENTY to remember, mostly bike-related: crashing, getting doored or hit by cars, breaking helmets with the force of impact, hitting deer, breaking bones, scraping off knuckles, leaving behind large swaths of epidermis on roadways throughout Northern California. There is so much more, I'm sure, but I can't remember it all.

So I'm grateful that since Chemo #3 Joe has been keeping a daily record of how he's feeling. I share it here, his telegraphic Litany of Woe.

Day 1: 3rd Chemo, out at 1pm, got hiccups at 2pm (lasted, on and off, until 10pm), a bit sleepy, numb fingertips. 8pm: headache, weak, nausea.

Day 2: Woke at 1am, nauseous. Fingertips not as numb as yesterday. Still nauseous at 7am. Nauseous all day. Hiccups on and off. Constipated.

Day 3: Feeling foggy at 7am, right fingertips numb, a little nausea. Constipated.

Day 4: Only a few hours sleep, nausea, headache, numb fingertips. I don't think sleeping sitting up helps with the nausea. Numb lips. Constipated.

Day 5: Depressed. Numb lips and right fingertips. Constipated.

Day 6: Numb lips and fingertips. Back pain. Constipated.

Day 7: Same as Day 6, more back pain, slight cold. No longer constipated. [Thank you, Dieters Drink. Man, does that work!]

Day 8: All of the above, weakness, diarrhea, bad back pain.

Day 9: All of the above, constipation returns.

Looking back on all of it, the impact of the meds is clear: the Prednisone Days 2 - 6 gave us Depressed on Day 5, the Neulasta shot on Day 2 gave us the bone pain that started Day 6 and continues this morning. And while tracking it is deeply satisfying, we also know it won't necessarily help us with the next cycle. The effects of the chemo seem to change each time. We can't predict how it will feel, what will happen. Something new will probably come along to scare the crap out of us. This reminds me of so many other experiences, like being the parent of a new baby. Just when you think that you have it wired, that you *know* when the creature will sleep so you can wash your hair, the whole shebang changes up on you, and you get to start over from scratch.

That's where the courage comes in. Sure, we have woe a-plenty, but lots more courage, thank goodness, since courage is all that is required no matter what we face. Courage, it seems to me more and more these days, is the expression of a ferocious and abiding love. And that, my friends, we've got.

Cycle 3, Day 2: The Cancer Social Club

Yesterday's treatment was a bit of a whirlwind. The infusion clinic was packed with people, the nurses short-staffed, but somehow we managed the trick of getting the one private room with a bed in it. Personally, I credit Joe's tendency to instantly become the teacher's pet, or the nurse's pet in this case. It could just be luck of the draw. But we've been lucky three times in a row...

The treatment itself went by very quickly. We were out of there by 1pm. Visitors made the time go by so much more quickly and entertainingly. Big thanks and love to Marty, Trish and Jessica for coming by and hanging out; to Hans for stopping in; to my lovely parents, Sari and Jean-Paul, for bringing lunch from Bi-Rite (such a class move), closing the party down with us, then joining us for coffee in the weak afternoon sun on our patio. And of course to Laurent. We were so happy to have him there with us. Amazingly full day.

Joe is feeling nauseous and hasn't gotten out of bed yet. We're both pretty nervous about an injection he has to give himself in about an hour's time. As you may remember, he landed in the hospital two weeks ago as a consequence of Neupogen injections he has to administer following chemo to boost the neutrophils in his blood. If his level of neutrophils drops any lower, they'll have to slow or stop the chemo - something we want to avoid. Anyway, they've given him ONE injection to self-administer this time to replace the 7, a pegylated (read: time-release, or so we're told) version of the same drug. There is the potential that he will *today* have the same bone pain that he had last round on the last day of injections. We dread this possibility.

Sleep still evades us, but we're delighted that we're arriving at the halfway point here. Joe looks great with a shaved head, and with everyone's loving support, we're coming through this with flying colors. It's still just so hard to comprehend that Joe has cancer (or had, we'll see after the 4th treatment, when they re-do the PET-scan). Such a crazy, ridiculous, random, stupid thing! Pondering that unknown makes me think about a quote from Rumi that a teacher shared in yoga yesterday, a few lines that sank in deep:


Be ground. Be crumbled.
So wild flowers will come up
Where you are.

You have been stony for too many years.
Try something different. Surrender.

Cycle 2, Week Three: Blurrrrrrry

I can't believe it's been two weeks since I last posted something, but it makes sense given that my most persistent feeling lately has been that everything's slipping by me so fast, and I'm just scurrying along (in flats) trying to keep up. It's as if there are these long dead times, in which we do nothing -- laze about, watch shows, take naps, have friends over and eat and laugh -- offset by these frenetic times, where I'm multi-tasking like crazy and thinking about why it is that in my head doing more things faster at the same time = evolution. Yeah, I know that's nonsense.

A brief summation of where we stand today and what we've been up to during this e-bsence:

First things first, Joe is feeling great. Ever since last Friday when he got out of the hospital (more on that below), he has been good and strong. He went out on his team's ride Thursday morning, and he just headed out for more of same. Excellent! He's been troubled by a dry cough for the past week or so, but it's just an annoyance. All other systems are Go. He has already begun to dread next Wednesday when we start this whole thing over.

Last Thursday Joe suffered extreme pain as a result of the Neupogen shots he has to give himself following the chemo. They'd told us that a possible side effect was bone pain, which we filed away in our minds as bone ache, similar to how you feel when you're getting a fever. So when Joe, at work, about 9am, started to feel like his lower back was breaking, we didn't put it together. By the time I got him to the hospital, he'd been having these worsening waves of crippling, fall-on-the-floor pain for four hours. It took as many hours for them to find a pain medication that would take him out of agony, and allow him to sit down. That was a super-rough ride. He ended up spending the night in the hospital. Big love and thanks to Trixie and Josh for tracking us down in the ER, then bringing pizza and drinks; thanks to Alex, Lisa and Nick for visiting; and Jim and Donna, too, of course, for spending time with us there. By the next morning, 7am, Joe was ready to go.

Since then, since the hospital, it really has been pretty easy. Joe doesn't have the same energy, but is still going to work every day, and, now that his appetite is back, making dinner most every night. That's been great for me, since with the Bay Bridge down this week, my schedule has been stupid - the usual commute taking twice as long, which has its benefits (like watching a fat orange sun set from the middle of the span of the Golden Gate Bridge, in stop-and-go traffic; like forcing me to go slow, etc.) but mostly just eats into my Joe-time.

We're going to try to really enjoy this weekend, knowing that this is the golden one, the One Before, and that he probably won't feel this good again for three weeks. Later today, we'll go get our flu shots (something neither of us has ever done before, but which is now required by the docs), then enjoy the garden and this beautiful cotton-candy October sunlight, just soaking up the heat and brightness of the day since we know we'll need that illumination in the weeks to come.

Cycle 1, Day 17: or is it?

Joe's feeling so fine these days that we are *almost* forgetting about lymphoma, except for his mounting dread as we approach Chemo #2 next Wednesday. He has only a minuscule amount of abdominal discomfort -- .5 on a scale of 1 to 10 -- evidence that the first installment of the Rituxan did its job of attacking those nasty tumor cells and blasting them to oblivion. He is eating pretty much normally, except that spicy food and alcohol are still off-limits. He is sleeping through the night without any sleep aids (more for me, hurray), and really, except for being grossed out by the thought of having to subject his body to this poison again, is doing great.

Oh, and the hair loss has begun. From the bottom up. Who knew? We heard from a dear friend of ours who had the same treatment that Joe should expect to lose it ALL after the second chemo. Joe's response is to plot Halloween costumes that incorporate the hairlessness. He's leaning toward Nosferatu, but I am still holding out for Dog the Bounty Hunter and Beth, with me as Dog, of course.

Joe feels like the effects of the chemo show in his face, that his eyes are more sunken in, that he is more wrinkly, an old man suddenly. I don't see it, he's still as foxy as the first day I laid eyes on him.

For this first cycle it was about a week and a half of misery for Joe -- pills and shots, those damn hiccups for two days, food aversion, sleeplessness, flu symptoms, constipation -- followed by a week and a half of gradual return to almost-normal. But we hesitate to extrapolate anything from this, and fully expect that every time will be a little different, maybe a little worse and harder and more wearing. But we will get through this and come out on the other side, maybe a little more wrinkled, certainly a little bit older, but dang, doesn't that beat the alternative??

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.