What We Are Now

If we are what we eat, Joe and I are straight-up pharma. We are not just buying, but eating, what they're selling.

I was thinking the other day that with almost anything else, I would've asked more questions, like thought about alternatives, was there a homeopathic route, what would a naturopath advise, but with the lymphoma, I've been hell-bent on its immediate annihilation, all-out nuclear war. Kill. The. Fucker.

Last night Joe had a PET-scan for which they injected him with radioactive glucose. Once he was done with his round in the machine, he was instructed to refrain from picking up babies or hugging pregnant women for 24 hours. Oh, and drink lots of water, as it helps you pass the radioactivity. Sweeeeet.

Since last week, we've changed our diet dramatically and Joe's is about to change even more as of tomorrow. Here's what's on the menu.

Now:
Allopurinol
Decadron
Vicodin
Ambien
Ativan

Starting tomorrow and every 21 days thereafter until early January 2010:
Rituximab
Cyclophosphamide
Doxorubicin
Vincristine

Plus I think they're giving him good ole Benadryl during the first round of chemo to offset any allergic reaction and knock him out, and will send him home with tasty, tasty anti-nausea medication.

After that all we need is some weed.

Joe lives pretty clean so this is so weird. [At first, I included myself in that sentence, but as readers of this blog know, I do have a migraine-fueled taste for narcotics.] Joe is always searching for a vice, like the time he valiantly tried to develop a cigar-smoking habit, an effort which ended in dismal failure (oh happy day). But he just doesn't seem to be able to commit to any vice, and beer is too soft to qualify. I can barely get him to take an ibuprofen most of the time; he just hates to mask the symptom. Really, having so many drugs in the house and in his body is so weird.

But we are happy to be pharma, we are fine with that, as long as ultimately it results in the disappearance of The Potato, may it burn.

Grade 3, Stage 2 (for now)

We're learning a whole new language of cancer and lymphoma, and added to our vocabulary today. We met Joe's oncologist, Dr. Maloney, this afternoon, and now have a charted cancer-path.

[Small aside: I admit to a small crush on Joe's doctor, 1992 graduate of Marin Catholic who grew up in Fairfax. But that's natural: he had me the moment he produced hand-outs for us (i.e., me) to take home and read.]

Cutting to the chase: Joe starts chemo next Wednesday, and will have 6 courses 21 days apart. This means he'll be done in early January 2010.

Some details about The Potato: Joe's follicular lymphoma is Grade 3, meaning that it's aggressive. It's currently classified as a Stage 2, which means that it is affecting more than one lymph node and is on only one side of the diaphragm (below his diaphragm in Joe's case). But as we get more information, the staging may change. The PET scan on Monday will tell us if it's more widespread (Stage 3, above *and* below the diaphragm), and the bone marrow biopsy that Joe had this afternoon will tell us if it's in the bones (Stage 4). NO MATTER WHAT the course of treatment is the same: chemo. And the chemo is curative. Such good news.

I was delighted to be shown the CT scan. Completely amazing to see Joe on the inside and to get a visual on the Potato. I do regret not seeing the bone marrow biopsy performed; Joe made the mistake of asking to see the tools used after the procedure. I think he won't soon forget.

Joe's got absolutely everything going for him: he's young, he's strong, he has a great attitude, and he will receive excellent care. Of course and as usual, one of the chemo nurses is someone Joe knows, a former client who remains delighted with the vanity that Joe made her. As we were leaving, she said if we needed anything at all, had any questions, to please call her even at home. That was the only moment today that I cried - people's utter sweetness in the face of this is profound.

It's going to be OK, it's going to be more than OK. We are so relieved.

We have a diagnosis

Joe's most excellent and super-communicative doctor called us at 5:30 today. We'd already given up on hearing anything today based on our earlier-afternoon call with him, but he called as soon as he had results, knowing we wouldn't want to wait. Such a relief to have information. The best news of the call: the doctor insists that if you're gonna get cancer, this is the one to get.

So here's the deal: Joe has follicular lymphoma, stage 3. The tumor, which is what we are now calling it, measures 12 x 6 centimeters. It's non-Hodgkins lymphoma but because it is Stage 3 (which identifies it as fast-growing, rather than slow) it will respond to treatment like Hodgkins, which is a really good thing. Because it is an aggressive tumor, it'll take up the chemo really well -- in the doctor's words, it will "melt away from chemo."

Joe has an appointment on Friday with oncology, where we will get more answers. I'll be along to scribe and scribble, adding notes to our "Living with Lymphoma" notebook which we started last week. Though he didn't want to promise, Joe's doctor seemed to think that chemo would take care of this nasty sucker - possibly no radiation required. Joe will also have a PET scan (see info below lifted from mayoclinic.com) at some point soon to illuminate the extent of any and all tumors.

Crazy as it may seem, we are so relieved. In fact, we're a little giddy. Joe just referred to himself as a total lymphomaniac. We will sleep better tonight than we have in three weeks, since we started down this path.

BIG LOVE to all our friends and family for the support that is getting us through this. We really do feel so very lucky and grateful to be held in so many hearts and minds. XXXXX

* For a PET scan, a small amount of a radioactive tracer is injected into your body. This tracer is then absorbed by your tissues. Tumors are typically more metabolically active than other tissues, so they absorb more of the tracer. A PET scan also may be repeated after the first or second course of chemotherapy to see if the treatment is working. Tumors that respond to chemotherapy don't absorb the tracer.

Love Is All You Need

Last night, after two weeks of tests, insomnia and anxiety, we received the news that Joe has lymphoma. My Joe, my sweetheart of 20 years, has cancer of the lymph nodes. We don't know anything -- what kind of lymphoma, what the prognosis is, what the treatment will be. Next week Joe will have a biopsy, which will help answer all those questions, and we'll take it from there.

Joe had been having abdominal pain for a while, mostly a dull ache. He dates it back to after our return from Oaxaca in June 2008; he's been aware of it since then, off and on. Recently it got worse, more pronounced discomfort affecting his ability to sleep at night, to be comfortable in bed, to lay flat on his back. He had an ultrasound on August 24th and a CT this past Thursday.

The love of friends and family is everything we need right now, because more than ever we know the truth of the words we both sang as kids. Now more than ever, but all the time, every day, every instant -- Love Is All You Need.

I'll post more as we know more. Right now we're just floating along, trying to integrate this unexpected news into our lives. Right now, if you want to know what you can do for us, love each other, please. It's all we need, it's all there is.

Love,
Ariane

A minute of beevision

This is the second evening in a row I've sat next to Hive 1 and entered a languid dreamlike state. Last night it was so hot and yet overcast, 90 degrees at 6:30, what everyone likes to think of as earthquake weather. I got home from yoga completely wrung out, quickly changed my clothes, grabbed a beer and my book, and went out to sit by the hive, knowing the air would be filled with the intoxicating smell of beeswax and honey, the odor of the colony.

It's extremely atypical for me to do this particular combination of things: grab a beer and a book and sit at that hour of the day. But it was so rewarding. Staring at bees going in and out, though mostly in. Observing crows fly by high overhead as a family of quail (four chicks) wandered through the yard and up into an apple tree. Watching bees delight in the borage. Sipping the beer and reading. Alert and relaxed, almost inside the thrum of the bees.

And tonight again, same story, except this time there is also a party next door adding to the thrum. Joe is in it, I can hear him, his voice rising sometimes above the others as I sit by the hive, drinking water and staring, wishing I didn't have a headache but also perfectly content to be over here alone with Jasper and these thousands of little striped creatures going about their business. It's almost dark and they're still now hanging around on the threshold of the hive, cooling, some meticulously cleaning the stoop, others blowing in still with full loads of pollen.

Tomorrow mid-day we'll take a look inside, but right now, it's just so pleasing to observe them from this vantage point, not mucking about in their beautifully patterned orderly little world. So very sweet.

Migraines are a lie. Narcotics are the truth.

This weekend, I went to see a healer. Yes, a healer. He's the healer of my teacher's teacher and very well regarded in the yoga circle I move in, so I figured why not check it out. At first, I couldn't remember a single physical ailment that he could help me with, but then my friend Nancy reminded me about my migraines. Duh.

Of course, I could've just asked him to tune-up my chakras. But as below, I'm not so good at this.

When I took my turn, my thirty-minute appointment, I'll admit that my first and most dominant feeling was "I'm so bad at this." I don't really know what to do in these situations (need a How To for healers), what to ask for, what to expect, so I tried to keep an open mind throughout. Tried, I say, since I will admit that there were times my eyes would want to snap open so I could see what was transpiring and ask a bunch of questions. Instead, I did my best to quiet my mind and just go with it.

Definitely, something happened in that room. I was very rapidly in a relaxed state. He worked on my head, neck and shoulders, asked me questions like whether I was really ready to let go of the migraines. I had to think about my answer a bit. I was advised to stop sugar and alcohol for a while. Interesting.

Then I just laid there on the massage table, face up, for a while taking it in, integrating it as we say. After a while, I opened my eyes and tripped out on colors I was seeing on the ceiling. That's right, colors. Very pretty. On my way out the door, Scott said that thoughts would come more slowly now. Interesting.

It was all very gentle, very simple, very kind. Scott, the healer, is a lovely creature. Afterward, I sat out in the living room with Nancy and chatted quietly. I went home, had a huge allergy attack and stumbled through the rest of my day.

But through the haze, the thought arose: Migraines are a lie. Narcotics are the truth.

Interesting. I hate the migraines, but love the vicodin or percocet or whatever other narcotic I can get my hands on/prescription for, and am very quick to hit the drugs at the slightest hint of a migraine. It suddenly occurred to me that the real problem was not the migraines but the pills, sad since I do love them unabashedly. Also that I pretty much hate my job and that I've relied on some mental padding to get through the past year or so. Mental padding = pills, obviously, of one kind or another.

Maybe this doesn't mean anything to anyone but me, but honestly, it rocked me. It's true that since the appointment -- allergy-attack notwithstanding -- I've felt clear, easeful in my mind, no sign of anxiety or any other forehead-crunching. It's only been a few days, but honestly I do feel different. I give Scott credit and my thanks for that, and for unleashing this realization, one that I so deeply needed.

burn bright, burn steady, burn long

Today's news of Michael Jackson's death really spun me around. I drove home blasting the tribute mash-up on Kiss FM (and yes, crying), totally stunned by the number of amazing songs and the depth of my love for and attachment to each one. With Marianne, Heather, Jessica and others, haven't we spent joyful hours dancing and singing along to these songs? They never fail to make me happy.

He didn't have cancer. He wasn't sick that we knew of. He was about to start some intense show-schedule at age 50. I thought he'd be among us, unraveling in his dramatic fashion, for a long time to come.

It really got me to thinking about something Sarah said on the radio years ago about Angelina Jolie (and which I've clearly remembered all this time) -- something about how when Angelina was with Billy Bob Thornton, she "reached her freaky fruition," i.e., she managed to travel the entire arc of her innate freaky by a young age and blow it out, get it over with. At least that's how I interpreted what I heard.

With Michael Jackson, did we ever see such an arc of freaky? What was left? How much crazier could he get? Maybe, as Joe said, it's kind of a relief for him, having travelled his entire arc, to finally get to be done.

But still I think it's just sad. He really was a genius of pop. There are few things that make me so consistently happy as "I'll Be There" or "ABC," or that make me bust out a helpless happy Snoopy dance every time without fail, no matter where I am, like "Working Day and Night" or "Billie Jean." Just genius.

RIP to the King of Pop who burned too bright and too fast. I so look forward to the next opportunity to shake my body down to the ground.

Long live the King.