Dropping the cancer bomb

In the last week or so, Dan and I have probably told at least 1,471 people about Dan’s cancer. Okay, probably not that many, but it feels like it. Part of it was that we were traveling, catching up with people we haven’t seen in a while and telling folks who would have no reason to know, except cancer is now starting to affect our social and work calendars.

But yeah, there’s been a lot of cancer-talk. I’ve got the story so far down to a 2.30-minute elevator speech and a two-paragraph email, with some glib banalities re: optimism thrown in so whomever I’m talking to doesn’t get that horrified look of “oh my god, she’s going to burst into tears right now, and then I’ll have to hug her or something.” You know, because it’s all about making y’all comfortable.

And nothing makes people more uncomfortable than having an afflicted person in their midst.

The best reaction? “Damn, that sucks. That totally sucks. How are you holding up?”

The worst reaction? “Yeah, my brother-in-law had that same type of cancer. He died. But I’m sure that won’t happen to you.” *

Most folks land somewhere in the middle, a mix of suprise, horror, and awkward toe-stubbing. Honestly, that's okay, too. What I resent is this notion that it's MY responsibility to put THEM at ease. I think that may be some weird repressed-girl-behavior -- this idea that you're never supposed to upset anyone or rock the boat.

Countless Chicken Soup for the Soul-esque books and articles have been written on how to talk to people with cancer without offending or upsetting them. Newsflash: we’re already offended and upset. Goddammit, cancer picked US. And we weren’t doing a damn thing to cancer. (Then again, a turkey bit my daughter’s finger this weekend at the petting farm when she was just trying to feed it some corn. Greedy bastard turkey, I hope you fry this Thanksgiving.) (There’s almost nothing funnier than a 2.5-year-old saying, "Turkey bit my finger!" over and over.)

Anyway, to all the folks we may have discomforted or disquieted in the last 10 days or so, sorry about that. We sent many of you here because it’s easier to write than speak about your heartache sometimes.

* real quote

Ix-nay on the infusion-ay

No treatment was administered today.

Yes, you read that correctly. We went there for an infusion. Instead, we got confusion!

One of the side effects of going to a oncology practice where eight different docs circulate all patients is that that one practice offers its own second, third, and fourth opinions on your case. It's been established that Dan is an "interesting" case. I don't think we understood how that qualifier would so drastically affect his care and treatment options.

Because Dan's type and manifestation of cancer is so weird, it's hard for the docs to come to a consensus on how he should be treated. Hell, getting them to agree of the tests he needed was a challenge. And my frustration here should not be intrepreted as frustration with this process -- I believe that this kind of Thunderdome forum yields better solutions than a everyone-play-nice-in-the-sandbox approach. But it's not a football they're wrangling over. It's my husband's health and our lives.

Dr. T was the one who delivered the news that their latest discussion of Dan had come down with him strongly favoring Rituxin + Fludarabine -- gene therapy AND chemo, as opposed to Rituxan alone. (The trade term is "combination therapy" vs. "mono-treatment.") Going to combination therapy means the whole game changes. If we were on a soccer field before, we've moved to an Olympic-sized pool.

The specifics of those changes are what our next round of Q&A with the oncologists will be. We walked away with some general ideas, and we'll try to outline those here in the next couple of days.

We haven't made any decisions about treatment yet. However, whatever Dan opts for will likely not begin until next year. We're tired, y'all. We have been on a damn roller coaster for three bloody months. One of the few certainties we have is that waiting to do something is not going to kill Dan. It's not even going to make him sicker.

If indeed we are now swimming instead of running, we're going to hug the edges of the pool for a while. Get used to the water temperature. Maybe see if we can find some arm floaties.

And because Dan is awesome, here is his suggestion for outwitting cancer:

DAN: "Maybe we just need to find a better place for the tumors. Like, say the Bahamas. Or Maui. You know, I go out to the pool, look around, tell my tumors I'm just going back to the room for a towel, could they watch my drink . . . ?"

ME: "Yeah, and then it's all smoke bombs and grappling hooks, and you make your escape through the skylight! Hell, baby, for all you know, they may just want to go to La Cross, Wisconsin or something. See if you can shake them at Joe's place when you go to Chicago this weekend."

What, me worry?

I'm heading off to my first Rituxan treatment in a few minutes. Here's an exerpt from an e-mail I sent my co-workers yesterday.

Subject: reminder -- out of the office tuesday Oct 17th
Folks,

Just a quick reminder - I will be out of the office tomorrow the 17th for the first of my cancer treatments.

I should be back on wednesday.

If I'm not back, please avenge my death.

dan

I'll try to post some more info when I get back this afternoon.

An eye for an I

Totally unrelated to cancer, but too cool not to share. Went to the optometrist saturday for an eye exam (time to get new glasses) and he took some hi-res pictures of my eye as a diagnostic tool. Since we seem to have a medical-imagery theme here at Sober & Malignant I figured I'd stick with the program.

Real men don't feel fear.

Its only been a few hours since I made the appointment for my first round of treatment, so I really don't know yet how I feel about it. It sounds kinda scary. From the common side effects section of the manufacturers website:

The most common adverse events were mild to moderate reactions during the first Rituxan administration: fever (53%), shaking chills (33%), weakness (26%), nausea (23%), and headache (19%). Hair loss was never reported.

Most of the time, side effects with Rituxan are mild to moderate. Usually, they are easy to treat. In most cases, side effects occur in the first 30 minutes to 2 hours after the treatment is started, and usually they go away before it is finished. Side effects are less common after the first treatment.

That doesn't sound too bad. However, from the uncommon side effects section:

Death related to Rituxan therapy has been rare. In general, most deaths have occurred after the first administration. Other rare causes of death have been kidney failure following rapid killing of tumor cells,

OK now, death is a pretty crappy side-effect, so we're not going to go there. According to Dr. B. the oncologist, the severity of a patients reaction to the drug is usually proportional to the extent and severity of the disease. Since I have a pretty mild cancer (is there such a thing?) I should experience minimal discomfort.

But of course, I'm a guy, and we guys don't dwell on such things. Instead we distract ourselves with nifty whiz-bang technology and neato-keen images like the one above. These are taken from a series of 200-odd stills that superpose the PET scan results onto the CAT scan images to allow for precise localization of the malignancies. These images are color-coded corresponding to the amount of glucose uptake, with bright yellow meaning the most uptake, ie the parts that are likely malignant. So those 9 frames up there are showing my malignant lymph node chains in juicy detail.

If all goes according to plan, my next scan in 6 months should show a reduction in the size of those tumors.

D-Day

Tuesday, October 17
9 a.m.

In lieu of current information

There's no new information, so I thought I would reward all you loyal Sober and Malignant readers with some of the images from my CAT scan that I promised y'all way back in August. These are slices through my body orthogonal to my spine, ie my spinal column is passing through the plane of the pictures, which in this case is also your computer screen. Shown are 25 out of over 200 seperate images showing my body in 5 mm increments from my head to my crotch.

He's okay, I'm freaking out

It's a sign of the times when you're conferenced into your husband's oncology appointment via speaker-phone on his cell. Because you leave for your employer's big annual conference in two days, and work has been . . . intense for the last three weeks.

So, hi y'all. And yes, we finally have an answer. Rituxan it is. And yes, several weeks ago, this was our best-case scenario.

So why am I so glum?

Because this is forever. Because Dan's cancer won't kill him, but it will never go away. Because it took us nearly three months, three surgeries, four doses of radiation, a bone marrow biopsies, and a dozen blood tests just to get to this point. I know what "monitoring" means -- more ingested isotopes, more lost days in doctors' waiting rooms, and many, many more insurance statements. [Brief aside: my boss did bring up the status of my employer's insurance saying that the employee contribution WOULD be going up this year -- "in no small part due to the Margulies family," while unsaid, did not go unthought, I believe.]

So, this never goes away. And that just sucks.

What the future holds

Met with another member of my oncololgy team today, a Dr. D. We finaly have enough data about my condition to make an informed decision as to what course of action to take.

The three options available are: Chemotherapy, gene therapy, and doing nothing at all. The later is not completely medically contraindicated, but the cancer isn't going to go away on its own, so sooner or later something will need to be done. Chemo is another option, but it's hard on the patients' system and has lots of unpleasant side-effects. In addition, clinical studies have shown that conventional chemotherapy is no more effective when started early in the course of the disease than it is when administered later.

So the doctors are recommending that we begin with a course of treatment using Rituxan, a new form of gene therapy that is targeted directly at the type of cells that make up the lymphatic tumors. The drug is administered through my Portacath in four seperate sessions, scheduled once a week for a month. The first treatment can take up to 6 hours, but the later ones usually run two or three hours. Following this treatment I would return monthly for a physical exam, then get another PET scan in 6 months to see what effect the drugs have had. Based on the results of the scan, we re-evaluate again between trying chemo, more Rituxan, or doing nothing for a while. Unfortunately, this disease can be put into remission, but its never actually cured. So this cycle, or some variation of it, may well continue for the rest of my life.

So it could be much worse. A few weeks ago this was our best-case scenario, so I'm telling myself that this is do-able. I just need to keep saying it over and over again.

Some context-free images.

The above drawings have been scanned from the helpful instruction manual I was given with my portacath. It is left as an exercise for the reader to figure out what the indicated parts on the illustrations actually are.