Cycle 1, Day 7: Normal?

Except for a little pre-diagnosis type stomach pain, Joe woke up feeling normal today. As I write this, he is doing sun salutations in the living room. Wow, normal, really? He took the last pills of the cycle last night, this morning had only a shot to administer.

It's been a rough week, more down than up, except for the 50-mile ride on Saturday. And the discovery that spicy food is off-limits now, a big downer. But this morning's feeling is a good one.

And by the way, I haven't seen him do yoga like this since before he broke his arm in May. Jump-backs to chaturanga? What? I'd say he feels better than normal!

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.

Chemo hiccups: who knew?

Joe's had the hiccups off and on (mostly on) since yesterday afternoon. Blessings on the internet for delivering this most helpful information, #1 of 37,500 hits in response to "hiccups and chemo":

Chemo hiccups (singultus) can be caused by corticosteroids given for nausea control, such as Decadron (Dexamethosone). Curiously, decadron-induced hiccups mainly affect men, especially older men, and not women. The good news is that people who suffer from chemo hiccups are much less likely to suffer from nausea and vomitting. The bad news is about a third of patients who stop the Decadron to cure the hiccups subsequently suffer from nausea and vomitting.

Joe had Decadron the night before treatment, so that doesn't seem like it. But it does prove the theory I was developing that if it wasn't hiccups, it'd be nausea. Interesting. And furthermore:

Some of the modern antiemetics (5-HT3 receptor antagonists) can cause hiccups. These include aprepitant (Emend), granisetron (Kytril), ondansetron (Zofran) and ramosetron.

Of course, Joe is taking Zofran. And with this information, I can remember that yesterday's hiccups started not long after he took 16 mg of Zofran while we were grocery shopping - after his delightful nurse Susan called to tell him to take them immediately. She'd meant to give it to him before we left the hospital.

Hiccups are such a petty annoyance, but try having them in the middle of the night. It's impossible to sleep through them!

I'm feeling better right now mostly because Joe was able to eat some dinner. A very exciting dinner: tiny servings of spaghetti with salt, cheese and olive oil. So happy he ate, and that -- for now -- the hiccups are gone!

Adjusting, Cycle 1, Day 2

Joe and I started shifting gears last night. In our busy hilarity all day at the Chemo Lounge, we kinda set aside some information that the oncologist, Dr. Maloney, had given us. Funny how we only really remembered it at bed-time, when it hit us both pretty hard. That's when we were both pretty sad about what's happening to Joe. I know they say this is the cancer to get if you insist on getting it. We had both hoped that the cancer would be isolated, and are still mad and sad that it's there at all.

As a result of the PET-scan, that disgusting test where they injected Joe with radioactive glucose on Monday, we now know that Joe's lymphoma is a Stage 3 -- in other words, it is found on both sides of his diaphragm. I took notes, and what I remember is that they saw active uptake (i.e., hungry bad cancer cells eating up the radioactive sugar) in the area of his right tonsil, right mandible, right armpit, middle of his back, left lung, left pelvis. Damn it. Even though Dr. Maloney has been telling us for a week that the Staging doesn't change the course of treatment, we are still sad about this. We would prefer just the one Potato, being sorta monogamous about our tumors. Instead we're poly-tumorous. And actually that may be going too far: Dr. Maloney didn't say anything about tumors, just active uptake...

As of yesterday the bone-marrow biopsy results were not conclusive, but the interim news on that was that so far it was negative - meaning not in the bone marrow. That's good. Reminder that finding evidence of lymphoma in the bone marrow pushes Joe to Stage 4. We really don't want this. Again, it wouldn't change the treatment, but still...

Joe is feeling pretty shitty today, tired and off his food. Yesterday was a really, really big day, so it's no wonder his body is shocked with everything he was put through. The psychological impact of it is also not small.

So yesterday we were silly funny clowns of chemo, but today I think we're both sad. I would give anything for Joe not to have to go through this. It's still just so hard to believe, so hard to accept. But we're also trying to go one day at a time and stay as happy and in love with each other and life as possible.

Adventures in Cancer Land, Cycle 1, Day 1

We're home after a long day in the Chemo Lounge at Kaiser. In so many ways, it was the best possible day it could have been -- we got the one room with a bed in it since it was Joe's first time and there was a lot of concern about how he'd react to the Rituxan; we had great, funny care from Susan Jones, our nurse du jour; Laurent and Hans came by and visited with us; and REALLY GREAT NEWS: Joe had no reaction to the Rituxan and seems to be doing absolutely great now.

The Rituxan is supposed to be really fast-acting, so Joe should have relief from the pain the tumor has been causing him very soon - the Rituxan will start targeting those bad B-cells and The Potato should start shrinking to a Tater Tot.

But probably my favorite thing about the whole day was Joe himself. He is so remarkable and has such a great attitude that he can make even chemo fun. Jean-Paul in particular would have appreciated the way that Joe asked me to pass him a large glove from the dispenser on the wall so he could inflate it and put it on his head, all just so that when the nurse arrived and noticed, Joe could quip, "I'm feeling a little fowl." I utterly love that.

We are on our way to roasting, baking, mashing The Potato! And I, no matter what comes, no matter what happens, am grateful every moment that I have Joe - really such an amazing, delightful human being. I am so very, very lucky.

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