Canciversary: on becoming warriors

If you've experienced cancer -- your own or that of a loved one -- then you, too, know this way that it creates its own time, its own calendar of memorable, dreaded dates.

And so yesterday, I shared these words on Facebook:

Four years ago we were still stunned and horrified at this visitation into our lives, standing at the brink of what felt like a chasm, staring mortality in the face.  

Four years ago we stopped being who we'd been before and became something else, something fragile yet something stronger.

We became warriors.

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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 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.