Sober and Malignant

When, not If

2008-01-22T22:03:00.000-05:00

Dan had his six-month exam with Dr. G today. And while he's still not showing any symptoms of lymphoma, he is slightly . . . lumpier than he was six months ago. Newly swollen lymph nodes are poking through his groin and neck. Dr. G had warned us this would probably happen and that it was the weirdness of being lumpy with cancerous lymph nodes that frequently drove patients to chemo, not the actual symptoms of lymphoma.

Which is another disconnect of Dan's cancer. His lumpy lymph nodes are indicative of the malignancy, but not really a symptom. Sweaty exhaustion will be the sign that the lymphoma is making him "sick."

So let us stress that Dan is not sick.

But Dr. G feels that this new lumpier landscape does mean that within the year, we will need to make plans for treatment.

There are still questions about what the treatment will be -- the chemical cocktail and its application schedule. And no doubt there will be another barrage of tests before any course is firmly set.

For now, Dan is back on a three-month exam schedule with Dr. G. No ground lost, no ground gained.

Quarterly inspection

2007-07-31T14:11:00.000-04:00

Since Dan has seemingly forgotten that he has 1) cancer and 2) a cancer blog, it falls to me to give y’all the latest update:

Zilch. Nada. No movement on the perimeter, no zips in the wire.

Dan went to visit with Dr. G last Friday, following our night up with feverish, whimpering Anna and some mysterious abdominal pain. (Anna’s fine now, her ailment chalked up to “fever of unknown origin.”)

In fact, Dan’s so healthy that Dr. G advised him that if it weren’t for the darned portacath, he could cut his oncologist appointments down to every six months. (Portacath is still supposed to be flushed every 6-8 weeks; we’re looking for a local source to handle this so he won’t have to drive all the way to Annapolis.)

Dr. G continues to echo our own sentiments that treatment at this stage is unnecessary and overly invasive. He did the usual exam of outwardly accessible lymph nodes (read: the groin clutch, the underarm tickle, the neck check), and all is well. For my part, I’m glad there’s a regular groin check going on. Reminds me that it’s time to make my own appointment.

Dan has made a cancer buddy at work, a co-worker who’s currently being treated for non-Hodgkins and prostate cancer. He’s getting Rituxan and Fludarabine, and yes, he has lost most of his hair. Apparently, the prostate cancer is the less serious of the two, but this shines a light on my own real fears about Dan’s diagnosis: what about the other cancers? What happens when some other illness catches up with him? Yes, Dan is stupidly healthy (Strong like bull, smart like tractor, as Dan says.) But still: what if?

I think it’s this “what if” that’s kept us from making the decision to remove the portacath. It’s become a talisman of defiance . . . yeah, you bitch, you may have caught him, but we got you, too, and any time he needs treatment, BAM! We just plug him in. I know a lot of cancer patients attach extreme significance to the portacath and the removal of the portacath being a resumption of their lives without cancer.

But we don’t have the same luxury. There is no life without cancer for Dan. There’s just . . . life.

oh. my. god.

2007-04-25T09:11:00.000-04:00

* Image swiped from Twisty Faster, my favorite spinster aunt with cancer. It's the receipt from her latest cancer med. For a one-month supply. It's not covered by her insurance.

** You know what kills me? The "ACCEPTED" text on the receipt. I don't think many people would be surprised to know that line would read "DECLINED" if Dan had to buy the same med for his cancer.

*** Seriously, $40,000 for a one-year supply of medicine to keep you alive? What are you supposed to do? Take out a third mortgage? Rob a bank? Sell a child? I've only got one kidney left, y'all.

**** Comment by Spinning Liz, a lymphoma patient, on this post: "If [my] cancer recurs I’ll need a stem call transplant, in which case my name will legally change to Old MacDonald because I’ll have no choice except to purchase the farm."

Dear people: Stop questioning our doctor of choice

2007-04-23T12:32:00.000-04:00

Boy, ya’ll sure do get nervous around a do-nothing cancer doctor and slacker-type cancer patients. “Surely, surely, there’s something to be done!” you exclaim. You have clips from magazines and anecdotes from friends. “Don’t do nothing!”

Dan and I have been avid healthcare consumers for several years, and we know the difference between good and bad doctors by now. It is very difficult to have to justify our choices to people we assumed would trust our judgment. For crying out loud, it took us over a year to buy a new stove. Do you really think we don’t know how to Google a doctor?

I’ve written my thoughts on doing nothing and counter-intuitively, why it may be a harder treatment choice than chemo or some other active treatment. I’ll try to expand on those thoughts later this week, and more importantly, see if Dan has something to offer. (Though he already kind of has here.)

Dan’s friend who recommended Dr. G to him died this weekend. When this gentleman was originally diagnosed with Hodgkin’s lymphoma, his life expectancy was 1-3 years. He lived for more than 20 years with his cancer. And he gave us two great things: hope, and a doctor we can work with.

5 to 15

2007-04-20T10:24:00.000-04:00

Dan’s new life expectancy statistic sounds way too much like a prison sentence to me. You get 5 to 15 years for robbing a liquor store. You get 5 to 15 for burning down a national forest.

To me, it’s this crazy, crazy idea of “blame the victim.” Through the years, healthcare has alternately cozied up to and backed off of this concept. Alcoholism is a “disease,” but a heart attack can be personally prevented by adopting dietary restrictions.

In the maelstrom of VT coverage, one interview stands out for me. It was with the head of student counseling services and the University of Virginia on NPR, and he had been called in on Tuesday to address the outcries of why Cho hadn’t been stopped. He quietly reminded Melissa Block that trampling individual rights hasn’t been completely okayed by the Supreme Court yet.

But the most important thing he said was that it is our instinct, our desire to have an explanation whenever a tragedy occurs. The idea is that if we can understand the cause, we can prevent it from happening again. But most of the time, there simply is not an explanation. It’s a terrible, terrible thing that no one could have predicted and most likely, could not have been stopped.

No one deserves to die. And even though no one deserves to die, it will happen. It will happen unexpectedly, it will happen violently, it will happen willfully, it will happen accidentally. It will happen. Assigning blame and fault will not stop it from happening. All the prevention and restrictions and regulations will not stop it.

Dan is alive and healthy. I am mourning as if he isn’t. I’ve been doing so much mourning that I can barely get out of bed. Mourning and grieving and looking for someone to blame. This week I learned there’s no one to blame -- up to, and including, the victims. And while this insight is great, it doesn’t give you much comfort.

Gloria Gaynor was wrong

2007-04-12T15:13:00.000-04:00

The first time I really noticed the term "cancer survivor" was when someone applied it me, less than a day after my initial diagnosis. He was only joking about my newfound qualification to date Sheryl Crow, but it started me thinking. A lot of people to whom I have told my cancer story since have mentioned that they too are "cancer survivors." And I appreciate that they are willing to share their stories with me, and they have helped me feel that there is hope. Truly there is bond among the diseased.

But I still think a lot about that term, "cancer survivor." In general terms, you are diagnosed with cancer, you fight it, and if you win, it goes away. You are then considered a "cancer survivor. " (Please note the abundance of war metaphors in this whole thing.)

I know I'm just nitpicking semantics here, but in many ways, it seems as though this doesn't apply to me. First, I haven't fought anything, at least not with any kind of toxic treatment. This appeals to my slacker nature, but it does make me feel like I haven't earned the appellation.

Furthermore, this type of cancer can never really be beaten -- it may go into remission, but it will never go away. So I will always have cancer, until I die, at which point I quickly cease to be any kind of survivor.

I guess the underlying paradox is that I will never be a true "cancer survivor," but that's kind of meaningless to me because, right now I live and feel like I don't have cancer at all. No kidding. If I was to describe myself to someone, cancer would maybe be the 10th or 11th thing I would mention.

Aside from furrows in the brows of the bean counters at my insurance company as they look over the costs of all of the medical services I've used, and a lot of waiting in hospitals and doctors office, having had cancer for four years hasn't really affected me at all. And much though my contrarian nature enjoys being different and unusual in whatever way, I have to admit its pretty darned confusing, too.

Not ready for prime-time

2007-04-09T14:04:00.000-04:00

As an on-again, off-again distance runner (certainly more off than on since the kids were born) I've always felt the allure of running a marathon. Marathon training has undergone something of a revolution in the past two decades, and both runners and races are proliferating. So I felt a little frisson of delight when Friday's mail included an invitation to join a training program for marathons and triathalons.

As an extra little karmic bonus, the program was sponsored by the Leukemia & Lymphoma Society. Hey! I've got a lymphoma. How cool is that?

But I'm reading their brochure, and I get to the section marked "Honored Teammate." And I read:

Now wait a damned minute! We all know who the "honored teammate" is that they're talking about: it's the stereotypical "cancer boy." You've seen him on Oprah, and Dr. Phil, and Dateline, and wherever else. The soft-spoken little bald kid with the Big C death sentence who wrote some book of poetry or said something that seemed wise beyond his years, and suddenly became a tragic media darling with some great wisdom to lay on us as his personal sun sets.

But this is the Leukemia & Lymphoma Society telling me about "courage" and "inspiration" -- and I, personally, am a freaking lymphoma patient. Do I need to exhibit "motivation and inspiration" due to the nature of my "challenge?" Am I somehow obligated to morph into Cancer Boy and be all inspirational and shit just because an oncologist has given me an expiration date?

Because I am so not ready for that. Despite ample evidence of these ticking time bombs sitting inside of me, I don't feel like someone with cancer. As far as I can tell I'm still just some bald middle-aged guy with two kids and a mortgage, struggling to keep it real. I am certainly not ready for my 15 minutes of fame, let alone be some kind of role model.

What's up, doc?

2007-04-09T08:58:00.000-04:00

I went for my quarterly visit to see my new oncologist, Dr. G., last thursday. As you may recall I have decided to leave the doctors at my old practice and become a patient of Dr. G's after an initial meeting with him last year for a second opinion. Whereas the docs at my old practice were very gung-ho, wanting me to get frequent inspections and regular imaging in order to keep on top of my cancer, Dr. G. has a much more mellow approach. As long as I remain asymptomatic, I should not worry. No need for more PET scans; they just cost money and provide something to obsess over. Simply come in for a gross physical exam and some blood work every three months, and thats it.

This is an attitude that is much more in line with my own. So I am now a patient of Dr. G's. There are some immediate improvements. Although his office is much farther away, it is nicer. Bigger, airier, better chairs. Coffee and donuts in the morning. They are also much faster. Where before I would wait for hours in Dr. T's cramped waiting room, here I was seen almost immediately for my porta-cath maintenance, and saw Dr. G himself less than a half-hour after our sceduled appointment time -- pretty good for a doctors office these days.

So whats the bottom line? Mostly good news. Based on my blood work and physical, I am still perfectly healthy. In fact, Dr. G. doesn't even like to use the word 'cancer' to describe my condition, he prefers to simply call it a 'malignancy.'

The bad news is this: unlike Dr. T, who told me that this was not a life-threatening problem, Dr. G believes there will be an impact on my life-span. Since the lymph system is so central to the body, there is a large possiblity that it could impact (Dr G said the word 'sperad' was inappropriate and incorrect) other organs, including my lungs, heart, or brain. Based on the experiences of other patients with my type of cancer, my median life expectancy at this point is five to 15 years.

Well, oh shit. My first thought is: the lump on my back was at least four years old. So does that mean my median life expectancy is now one to 11 years? Answer: no. It seems that this particular clock starts ticking from the time of diagnosis. Of course in my case, that makes no sense. My ~~cancer~~ malignancy could have been diagnosed four years ago, starting my clock then, and nothing would have changed, objectively. This just shows the futility of trying to apply gross statistics to individuals, as Dr. G was at great pains to point out. In fact, since I have been malignant but asymptomatic for four years now, it means that I really do have indolent (read, 'slacker') malignancies. Plenty of his patients present tumors that look the same under a microscope ( low-grade folicular lymphomas) but who require aggresive treatment in short order. So there's still a lot of hope that I'm pretty far to the right side of the life-expectancy bell curve.

Incurable, but treatable

2007-03-27T11:23:00.000-04:00

The news that Elizabeth Edwards’s cancer has returned has given me a new soundbite for describing Dan’s cancer – “incurable, but treatable.”

An unwieldly phrase, but accurate. Basically, it means she’s living with cancer. Cancer has moved into her house, and it isn’t leaving any time soon. When Granny goes round the bend and starts running down the highway in her nightie, you generally don’t shoot her. You sigh, clean out the guest room, hire a night nurse, and keep an eye on her meds. You make accommodations and adjust your expectations to life with Crazy Granny.

Some cancers are like living with Crazy Granny. You don’t stop living just because Crazy Granny has moved in. Crazy Granny requires time and attention and doing things you didn’t have to do before, but shooting her (or yourself) is not an option.

Sometimes Crazy Granny even teaches you some stuff. To take care of Crazy Granny, you have to do all these things you’ve never done before. Not to say life wasn’t a lot easier before Crazy Granny showed up, but living with her teaches you that you can do damn near anything you have to do.

To anyone who has tut-tutted that Elizabeth Edwards should pull the shades and “focus on her health,” I say, get bent. Either you’ve got bigger problems with women taking charge of their own lives, or you’re someone who gets kicks out of suffering. Both are really sad.

Elizabeth Edwards (and John) get mad, outrageous props for letting Crazy Granny Cancer not slow them down. They know better than anyone else just how much work it's going to take to keep her in the guest room and off the highway.

The Do-Nothing Post

2007-02-05T15:52:00.000-05:00

As if it weren’t completely obvious from our do-nothing cancer blog, you’ve probably figured out that we’ve decided to do nothing to treat Dan’s cancer, at least for the time being.

Meeting Dr. G in December was probably what crystallized this decision. Dr. G seems to be able to treat Dan as a cancer patient without actually treating his cancer. The previous oncology practice had told us that we were “smart people” and they wouldn’t “insist” that Dan go through any time of treatment . . . but they weren’t exactly sure what to do with him if he wasn’t going to have chemo.

Let me back up here a moment: everyone knows that Dan has non-Hodgkins stage 1 indolent lymphoma, hereafter known as nHS1IL. And this sucks, but not in the usual cancer-sucks way, right? nHS1IL sucks because it just sits there, lazily multiply in the lymph nodes. Sometimes it makes the nodes break free of their moorings and bob to the surface around the groinular area. You poke them, and they’re kind of roly and squishy.

But mostly nHS1IL just hangs out, being cancerous and malignant and whatnot. Give nHS1IL long enough, and its host will develop symptoms like exhaustion and night sweats. When such symptoms develop, this means nHS1IL has gotten a little ambitious and may be working its way out of indolent Stage 1. At this point, treatment that shrinks the nHS1IL tumors in the lymph nodes is called for.

Which is good – no one wants big ole tumors making them all sweaty and tired. However, treatment will only shrink the tumors. It does not make nHS1IL disappear. Many of the tumors will get so small that they might as well have disappeared. But inevitably, nHS1IL will return.

This means that the goal for treating nHS1IL isn’t achieving remission. It’s achieving asymptomia. A non-symptomatic state. Which Dan is currently in. How healthy he is right now is as healthy as he could ever be, with the exemption of a few bad habits and general effects of aging.

Here’s another reason nHS1IL sucks. Early treatment – treatment before the sweats and the tiredness starts – hasn’t been shown to actually prevent or delay the eventual onset of such symptoms. Now ain’t that a kick in the crotch?

It also goes against every popular portrayal of cancer we know. Cancer is something we fight, not live with. Cancer gets better when treated early, not later. You never wait for symptoms to develop. You take action now before it’s too late and the cancer spreads and multiplies and begins to shut down your major organs. No matter the cost, no matter the side effects, no matter how sick treatment makes you, it’s all worth it to have your body free of cancer.

So how would you feel if you found out that no matter what you did, you will always have cancer in your body?

It takes some getting used to, Dan says.

Part of getting used to that has been finding a doctor who will work with Dan and sees not medically treating his cancer as an acceptable form of patient treatment, rather than seeing Dan as a patient who is resisting treatment for his cancer.

But Dr. G echoes what up to now has been our gut feeling – any chemo is going to be a bitch. It’s going to be a pain to go through, it’s going to take time and energy from a person who doesn’t have a lot of either to spare, and there’s little reason to go through it right now.

So, this is kind of it for now. I hope that Dan will continue to use this space to share his thoughts with you. And of course we’ll let you know if any new information comes available or if Dan’s condition changes. But for now, we’re going to concentrate on other stuff. Cancer is, like, so 2006, already.

Not as simple as an oil change

2007-01-09T15:44:00.000-05:00

As you may recall, the eager-beaver docs at my current practice had me rigged with a porta-cath while I was under for one of my biopsies. This was done partly for efficiency, since I was under the knife anyway, and partly on the assumption that I'd be starting treatment soon enough.

Well here we are four months later, and its looking more and more like any treatment will be a ways off in the future. This is a good thing, but unfortunately the porta-cath is not a "set-it-and-forget-it" kinda thing, it needs maintenance. To whit, every 6 weeks or so, it needs to be flushed with heparin, an anticoagulant, to keep it from clotting up.

While this is actually a simple proceedure (I've had it done twice now, and it only takes a few minutes) it turns out that getting it done is not as simple as taking your car into the garage for an oil change. I found this out when I asked Dr. G. if he could have it done while I was seeing him for my consult. And he wouldn't touch the thing with a 10 foot pole, because I was not his patient.

So either I need to get this thing ripped out, or I'll be seeing a doctor at least once every six weeks, for a while.

Still here.

2007-01-04T10:06:00.000-05:00

Hey y’all. S’up?

Oh, this thing? Yeah, it’s still our cancer blog.

----------------------------

The week before Christmas, Dan and I went to get the so-called second opinion with another oncologist. Unfortunately, it turns out that Dan still has stage 1 follicular non-Hodgkins lymphoma. (Hey, it never hurts to hope that absolute incompetence on the part of four oncologists, two surgeons, five radiologists, at least three labs, and one hospital led to a misdiagnosis.)

Dan selected Dr. G based on the recommendation of a co-worker who’s had Hodgkins lymphoma for many years. After the requisite waiting period (this time with cookies, though, since the office had apparently had their holiday party that day), Dr. G reviewed Dan’s records, then gave him a physical exam – including prostate, something that hadn’t been done up til then. Lymphoma has been known to get ambitious and try to set up residence there. Everything was in its place, though a few groinular lymph nodes seems to be bobbing to the surface again. A normal occurrence in light of their cancerous state.

We explained to Dr. G that our primary reason for see him was we were hoping for some help unraveling the myriad of treatment options. He recapped said options thusly.

Primary Options
1. Do nothing: more on this later.

2. Rituxan antibody mono-therapy: as previously discussed, Rituxan is the critics’ darling right now. Practically no side effects, a non-toxic nature, and a minimalist infusion schedule. Rituxin is still new, expensive, and hasn’t done a lot of solo-piloting.

3. Rituxan + Fludarabine combination chemotherapy: Apparently, Fludarabine isn’t the only contestant in the beauty pageant, but it’s a popular choice. I kind of zoned out on the others, because basically, it’s back to the whole chemo scenario. Though it’s better chemo option than most.

Secondary Options
4. CHOP combination chemotherapy: four chemo drugs in one infused cocktail – cyclophosphamide, doxorubicin (Adriamycin), vincristine (Oncovin), and prednisone (a type of corticosteroid). Odds are they’d sprinkle a little Rituxan in, too. This is closer to traditional chemo, with multiple drugs, each doing one specific thing. It requires more infusions and has more side effects.

5. Targeted radiation treatment: real Star Trek stuff. Injected/ingested isotopes that attach to the cancer cells and deliver radiation right to their doorsteps. We’d originally heard that Dan’s cancer was too widespread for radiation treatment.

Dr. G also directed us to the best online resource I’ve found regarding cancer – People Living With Cancer, www.plwc.org. Developed by cancer docs, independent of pharmaceutical companies and ribbon-wielding advocacy groups, it has science-based information in clear language. Check it out.

We’ve had a couple of weeks to mull over the options, and we’ve made some decisions. But this post is too long already. We’ll be back soon.

Me and Plato

2006-11-14T20:38:00.000-05:00

On my desk, I have a small scrap of paper with what is most likely a bastardized version of a quote attributed to Plato:

Be kind, for everyone you meet is fighting a hard battle.

The idea behind this is more than "be nice." It's more of the idea that struggle is in the eye of the beholder -- what's natural for you is impossible for her. And so on. And that we're all struggling with something. You never know what's really going on with someone else, so tread lightly. Be sensitive. Don't be such a dick that they're forced to tell you that their husband has cancer so their mind is kind of scattered these days and they just figured you could wait frigging 12 HOURS for the name of someone to interview.

Then again, they could just be venting because they found out they have cancer. And they still have a writing deadline, so could you please get off your lazy ass and give them the name of someone to friggin INTERVIEW, for pete's sake.

Another observation, the originator of which I've forgotten: People treat relationships like basketballs, when they're really like soap bubbles.

Yeah . . . that's all I got. Holiday season make me maudlin. And budget season makes me borderline psychotic. Be nice today, y'all. This is hard for all of us.

Am I sick?

2006-11-10T11:16:00.000-05:00

I took a hike up to the Universities Health Center to find out about flu shots. The kindly cleck informs me that "due to shortages, flu shots are only available to high-risk patients."

For the first time in my life, I waved the cancer flag. "High-risk, yup, thats me. Got me a compromised immune system I do." It felt awkward though; there's something odd about having a dreaded disease, but still looking perfectly healthy.

I was sent upstairs, where after a little confusion, I was given an appointment and some paperwork to fill out.

In addition to the usual "name / rank/ serial number" trivia there was the standard bank of yes / no questions. "Are you allergic to latex," "Are you taking any medication," and one that had me completely stumped: "Are you sick today?"

I turned to the nurse and said "I don't know how to parse this question. What do you mean by sick? I don't have a fever, so I'm not sick in that meaning of the term. But I DO have freakin' cancer, which is certainly a sickness as well."

The nurse just smiled as if she got these questions from Martians like myself every day. "Why don't you just say 'yes' then," she suggested.

So I checked the 'yes' box, and in the 'tell us about it' field I proudly wrote "I HAVE FREAKIN' CANCER!"

But I'm always going to have cancer, right? So am I going to be sick every day of the rest of my life?

Move along now, nothing to see here

2006-11-06T09:41:00.000-05:00

Sober and Malignant is kind of on hiatus right now. There was so much frantic activity right after Dan's diagnosis that we didn't have a lot of time to reflect on what was going on.

It was when I found myself crafting an elaborate Excel table named "cancer matrix" designed to address all the pros and cons of various treatment options that could be crosstabbed with "desired outcomes" that I personally called time-out.

The simple fact is that Dan has cancer, and he's always going to have cancer. The term "cancer survivor" doesn't apply here in the sense that you "have beaten" cancer by following the traditional stages of ~~grief~~cancer:
1. intial diagnosis of cancer
2. floundering and additional diagnosing
3. treatment
4. treatment side effects
5. remission and/or "cancer free" diagnosis

In Dan's case, (as we understand it) either you have cancer, or you're dead. We can treat it with chemo and stuff, but this type never really goes away.

But this type of cancer also never gets you really sick or kills you, especially if you periodically beat it back with chemo so it doesn't spread into the bone marrow or farther up the lymphatic system. But if Dan ever gets another type of cancer (or other immunity-compromising bugaboo), it gets a whole lot worse very quickly.

Which circles back to the original point -- cancer sucks. Everything about cancer just sucks. We're tired of life sucking, so we're going to ignore cancer for a while. At least until after the holidays, because holidays bring their own brand of stress and joy and suck.

We appreciate the good wishes and tender admonitions to "not let things go on too long," whatever that means. However, Doing Nothing has always been an acceptable option to us and our oncologists. Yes, there are other oncologists and facilities (the next person who tells me about "John [sic] Hopkins" gets a finger up their nose), but cancer treatment isn't like shopping for the best deal on a car, looking around until someone tells you what you want to hear.

We are exquisitely sensitive to the politics of cancer and the fact that what we are doing now in doing nothing makes a lot of people nervous for a lot of different reasons. Dan's cancer has affected his life, but to date, it has not affected his health. Every treatment option that's been discussed affects both. To us, right now, that's not acceptable.

We'll let everyone know when we're ready to git back after things -- maybe next week, maybe next year.

I should also add a disclaimer that while I use a lot of "we" here, I am speaking solely for myself. Should Dan come up tomorrow and say,"you know, I want to see if we can find someone who'll just cut the entire lymphatic system out, then give me a bunch of radiation topped off with kick-ass chemo, and if that doesn't work, then I can just live in a plastic bubble," I'd say, "Outstanding! Let's go look for experimental Canadian doctors RIGHT NOW! Maybe we can find a drug company willing to underwrite the whole thing! If not, I still got two working ovaries and a 150 I.Q., all the makings for a top-dollar egg donor!"

Dropping the cancer bomb

2006-10-23T11:38:00.000-04:00

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

2006-10-17T20:45:00.000-04:00

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?

2006-10-17T08:24:00.000-04:00

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

2006-10-16T10:16:00.000-04:00

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.

2006-10-13T14:49:00.000-04:00

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

2006-10-13T13:40:00.000-04:00

Tuesday, October 17
9 a.m.

In lieu of current information

2006-10-12T18:34:00.000-04:00

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

2006-10-03T17:01:00.000-04:00

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

2006-10-03T14:17:00.000-04:00

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.

2006-10-02T19:30:00.000-04:00

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.

The sound of crickets chirping

2006-09-29T09:09:00.000-04:00

No news yet. I did get in touch with Dr. T. He had not yet heard about my wayward lymph node (and on hearing about it his first response was "I told you you were an interesting case." He could have said it with a little less zest, but I hate to take the fun out of a fellas job.)

I have a follow-up appointment with Dr. T. scheduled for next Tuesday; by then he should know enough to recommend a treatment for me. Whatever it is I won't start until I get back from my mini-vacation on October 10th.

More confused than ever

2006-09-19T12:53:00.000-04:00

Last time we checked in with our plucky hero he was patiently awaiting the results of last weeks lump-fishing expedition. As you may recall, the purpose of this biopsy was to determine the nature of the mystery lump on my back. If the lump was benign, it would mean that there was just the lymphoma to deal with, and the oncologists wanted to start me on Rituxan, a new form of targeted therapy for non-Hodgkins lymphoma patients, one with relatively few side-effects. If the lump was malignant, it would mean I had TWO types of cancer, and a more conventional chemotherapy would be called for.

So what was the result of the biopsy? Well, it was malignant....but it was actually another malignant lymph node. Of course most human beings don't have lymph nodes on their lower backs. So it turns out Dr. T. wasn't joking when he called me "interesting."

Now what does this mean for my treatment? I have no clue, and I'm hoping to hear back from Dr. T., the oncologist, to help straighten me out.

One thing I do know, though -- I've had that lump on my back for at least 4 years. So if you needed proof that I really do have lazy, slacker cancer there it is. Four years and I never knew.

Homeostasis of lumps

2006-09-13T10:21:00.000-04:00

As Beth mentioned I went under the knife Monday to have one lump removed and another installed. Lots of folks have expressed interest in the Portacath so I've posted a few pics showing where it sits and what it looks like. It doesn't hurt much anymore but it still feels odd, like it doesn't belong there. I imagine I'll get used to it sooner or later.

Holes on both sides of him

2006-09-12T10:29:00.000-04:00

A quick post to let folks know that Dan successfully had his second biopsies and portacath installed yesterday at Doctor's Hospital. An unwieldly gall bladder in the patient scheduled before us delayed the procedures by almost three hours, but Dan came through fine. He's feeling this round of surgery more than the initial lymph node removal, but that could be caused by several factors -- location of the incisions, how deep or shallow they cut, the fact that he had two procedures done at the same time.

And once again, it took multiple tries to get his IV in. Dan's got great veins, but they seem to thwart every nurse's attempt to invade them. Guess we should be glad they'll do chemo via the portacath rather than IV. (Which begs the question: do heroin users ever get portacaths installed? It would make sense that there's a black-market portacath installation service. They gave Dan a little portacath accoutrement kit, which I threatened to make him carry around in a black leather fanny pak, a la heroin addicts.)

Biopsies results should be complete by the end of the week, first part of next. The best outcome would be that the lipoma removed yesterday for biopsies is not malignant. These results will determine the type and frequency of chemo.

Other people with cancer

2006-09-08T09:51:00.000-04:00

One of our earliest posts was on the Rules of Cancer, which basically consisted of staying off the Internet until you've talked to your doctor.

Once that hurdle is cleared though, get your Google-fu going because it's open season on searches.

However, having gone through a pretty intense and vaguely obscure illness myself recently has done a good job of dampening my enthusiasm for other people's health information (OPHI). Bottom line, it's irrelevant and useless. If your own damn doctor changes your diagnosis every other Tuesday, then what good is anyone else's cancer blog?

I'm breaking my own protocol here to refer y'all to one of my Internet heroes, Twisty Faster of I Blame the Patriarchy, who was diagnosed with breast cancer more than a year ago. Several brutal treatments later, she offered the following:

. . . no matter how bottom-of-the-barrel crappy your life seemed before, it was an azure-skied, gardenia-scented island in paradise compared to the balls-out nightmare into which the giant flying claw of Fate drops you when you get cancer.

Amen, sister.

My wife made me call you . . . again

2006-09-07T10:52:00.000-04:00

After a week-long game of phone tag with the surgeon's office and the hospital, Dan's next round of surgery is scheduled for Monday afternoon, Sept. 11. The suspect lipoma will be removed and biopsied and the portacath will be inserted. Both are minor, quick procedures, and the prep and recover will be the longest part of the day.

Dan made so many calls that he knows the names of all the admin staff, their vacation schedules, their kids' names, and what they studied in college. One time when he called, the receptionist tried to transfer him to the surgical coordinator who was out of the office. Dan had to tell the receptionist Janice was filling in for Maria this week while Maria was in Connecticut visiting her mother who's having some gout problems this summer.

A note on my visit with Dr. B.

2006-08-31T21:57:00.000-04:00

Like any encouter with the medical profession, this one entailed a fair amount of waiting. In order to kill some time I indulged in my usual passtime of being a nosey bugger, and flipped through my chart, which was conviniently left outside the exam room. On the top of the stack of paerwork was a letter from Dr. T the oncologist, addressed to my primary care physician, summarizing our initial meeting. Dr. T dryly described me as a "healthy, well-developed, skinny, 39 year-old caucasian male," which I found priceless. Somewhat more ominously, however, he closed the note by saying "thank you for referring this interesting case to our practice." I don't know if this was a banal medical politeness, but I do know that when it comes to illness, I don't like being interesting.

lumps, etc.

2006-08-30T16:05:00.000-04:00

Dan met with Dr. B, the surgeon who removed the original malignant lymph node, yesterday to discuss the necessary additional lump-hacking and portacath installation.

It was basically just another meeting. The hospital will follow up with Dan to schedule the surgery.

Only tantalizing tidbit from this encounter was learning that there's a slight risk of puncturing Dan's lung when installing the portacath. The portacath will be completely under the skin, leading into a vein. That way for chemo, the needle will only have to go into the portacath, not the vein itself. I'm assuming this is such a better procedure than need in the vein that it overrides any concerns of lung-puncturing.

The OUCH

2006-08-25T16:29:00.000-04:00

In her post about yesterday's fun and games at the doctor's office, Beth neglected to mention that I had my bone-marrow biopsy done as well. This involved jamming a big ol' needle into my hipbone and taking a core sample out of the marrow within the bone. That kinda hurt.

And the worst indignity of all, I was lying on the table with my pants pulled down for almost a half-hour and the nurse never even told me I had a nice ass.

A visit to the oncologist, wherein a core sample is taken, and data is spouted

2006-08-25T11:49:00.000-04:00

Deep from the bowels of managed health care, a whimper goes up.

"Do you have any idea when the doctor will be able to see me? We've been waiting for two hours now."

And the trees whisper a gentle "nooooooo. . . . "

---------------

I'm torn between reporting on the experience that was our first return trip to the oncologist or trying to make sense of the volley of data that was hurled at us by the doctor.

Let's start with the data. That's what you're really here for. Be prepared that we may update or restate some of this as we do our own research. Did I mention the whole managed care thing?

Dan is still completely asymptomatic. No fever, no rash, nothing. This contributes to the downgrading of his condition to "yeah, it's cancer, but not BAD cancer."

But! New stuff! And changes! Remember the lipoma? It showed up all black and glucose-absorbing-like on the PET scan. Turns out that sucker is absorbing hella glucose. More than the lymphoma, actually. This has the doctors scratching their heads. What is it, they wonder, their collective brows furrowing.

Since all the brow-furrowing in the world can't beat a good, old-fashioned biopsies, back to the surgeon we will go for more lump-hacking.

Until that lump is hacked and analyzed, chemo can't be prescribed. Here's the good news that we're almost reluctant to mention because our luck is generally crappy: if the lump isn't malignant, Dan doesn't even have to get chemo-lite Dr. T originally mentioned. He gets the Pepsi One version of chemo. Four Rituxan treatments over four weeks, then follow-up in six months. This would be incredible, so awesome and it would mean that our cancer blog is being authored by cancer-poseurs. S'okay – Oprah can go postal on us, a la James Frey.

Should the lump be malignant – okay, I kinda stopped listening at this point. Because the lump is not going to be malignant. Not. Going. To. Be. Malignant.

[Nothing changes if the lump is malignant – the original diagnosis and chemo prescription don't really change. So we got some might-be good news and might-be nothing new news.]

We're still waiting for the bone marrow results, and Dan's got an appointment with the surgeon next Tuesday where they'll make plans to hack the lump and install the portacath. It's out-patient, but will be done at the hospital. And Dan needs another bit of irradiated testing in the form of a MUGA heart scan. (Keep the light on for us, Doctor's!) No idea when we'll be able to get in for those procedures.

Bone Scan

2006-08-25T09:45:00.000-04:00

Went to the hospital tuesday to get a bone scan. This is another radio-nuclear test, and while I understand the mechanics of HOW it works, I'm not sure why Dr. T sent me to get one. I guess they want tto make sure there is no cancer lurking somewhere they don't know about. Once again I was injected with a radio-isotope, this time technitium-99m, a beta emitter with a half-life of about 6 hours. As with the PET scan, I was given an injection of the isotope mixed with a compound that some part of my body likes, specifically magnesium, which is absorbed by bones. This time it took about 3 hours for the compound to be distributed throughout my body, but unlike the PET scan, it doesn't matter what you do during those hours, so they send you away for a while.

On my return I was placed in the scanner, which is just a camera that is sensitive to gamma rays. The proceedure was painless and took less than a half-hour, with the results that you see above. According to the diagnostician, no abnormalites were observed, so I guess I passed this test with flying colors.

Oh yeah. This time I remebered to bring a geiger counter with me, and boy was I hot! I carried it around with me for a few days and watched the readings slowly decrease. After about 24 hours (4 half-lives) you could actually distinguish my kidneys (which is how the technitium leaves your body, in the urine) from the rest of my torso by the increased radiation. In the 3 hour gap between the injection and the scan I wanted to go downtown and stand outside the White House to see if the radioactivity I gave off was enough to be noticed by the Secret Service, but instead I opted to take the nanny out to the community college and help her register for classes. Cancer or no cancer, it turns out I still have responsibilities I can't duck.

An Open Letter to the Universe

2006-08-22T14:06:00.000-04:00

Dear Universe (or God or Karma or whatever you believe is out there unseen, yet appears to be all up in your business),

You can stop now.

This whole thing where our bodies rebel against us? Yeah, it's gotten old. Just saying you might want to think about trying something new and different. Like us getting an unmarked box full of $100 bills in the mail. Or waking up and discovering that we can now play the guitar. Or that a lemon tree has mysteriously sprouted in our backyard. Those are good suprises.

David with life-threatening anemia. Beth with a rotting kidney. Dan and the cancer. All in eight months. Not good surprises! Bad surprises, actually.

So, find someone else to pick on. Cause we are totally broken up now.

(Call me!)

Kisses,

The Margulies Family

He's starting to glow from all the radiation

2006-08-22T13:35:00.000-04:00

Another week, more tests. Today Dan is having a bone scan done at Doctor's Hospital. The same hospital where they yanked out my kidney. The same hospital where they yanked out the lymph node that started this whole cancer thing. We keep showing up there at our current pace, the registrar is going to start keeping our file on his desktop.

Dan just called to say that the scan was complete and he was waiting on pictures to be developed. The technician's off-the-record comment was he didn't see anything unusual in the scan.

Dan went in at 9 a.m. for an injection of some radioactive stuff, then went back at noon for the scan. The lag allowed the stuff to makes its way into his skeletal system. He'll add more on the process when he posts pics.

This Thursday is our first big post-diagnosis pow-wow with the oncologist. The festivities will probably kick off with a bone marrow biopses for Dan (big needle, hip, a leather strap to bite down on), followed by a discussion on what Dan's chemo will be.

Dan will need to have a portacath installed surgically before chemo begins, which means another trip to Doctor's Hospital next week. (No, Dan doesn't have testicular cancer. I just liked the manly language and cartoon illustration used to describe the portacath on this site.)

Making peace

2006-08-19T15:13:00.000-04:00

Despite yesterdays disturbing news, my dreams last night were all about a demo that I am fabricating at work . So I guess my subconcious has made peace with my fate, even if my concious mind is still a bit wierded out about the fact that my body is rebelling against me, and doing it in hiding, deep inside of me where I can't see it.

The OCHO!

2006-08-18T22:22:00.000-04:00

Last week, my boss lent me his copy of Dodgeball. I can't remember exactly why he thought I was missing something having never seen it, but I gotta tell y'all, I don't exactly look to Ben Stiller movies for enlightenment or really, entertainment.

I won't recap the plot here because it's a timeless tale of scrappy underdogs fighting an egotistical Goliath, with some really innane sports-TV banter and assorted stereotyping. Oh yeah, and well-placed B-list celebrity cameos. Chuck Norris. William Shatner. And Lance Armstrong.

Who, on a day when we're feeling pretty crappy about cancer, gave us this gem:

LA: "Quit? You know, once I was thinking of quitting when I was diagnosed with brain, lung and testicular cancer all at the same time. But with the love and support of my friends and family, I got back on the bike and won the Tour de France five times in a row. But I'm sure you have a good reason to quit. So what are you dying of that's keeping you from the finals?"

Dude, my boss is really awesome. And apparently clairvoyant.

Not even qualified to play one on television

2006-08-18T17:16:00.000-04:00

Had a follow up call from Dr. T today regarding my preliminary scan results. It turns out I can kiss my career as an amateur radiologist good-bye. Remember those PET scans that yielded all those neato-keen images? You know that dark blob in my pelvis? That's not my bladder.

That's my cancer.

It's a whole bunch of malignant lymph nodes. Which didn't surprise Dr. T that much, since that's where the original biopses was done and where the malignancy first manifested.

However, it surprised the hell out of me. I'm pretty freaked out.

Since it's what Dr. T suspected, the course of treatment he initially recommend is still basically the same. Maybe a little more intense.

I really don't want to say much more now. I have the same feeling now that I did when the surgeon first told me about the diagnosis of cancer. This weird, stomach-dropping-out-of-my-body feeling.

Comments

2006-08-17T15:11:00.000-04:00

It turns out that we like having you fine readers of Sober and Malignant leave us kind notes and encouraging thoughts. To facilitate such transactions, we have rejiggered the settings so you no longer need a Blogger account to send us your love-offerings.

You will, however, need to tell the spambot that you can interpret his crazy, wavy writings. Trust me, it's a small price to pay. None of y'all were trusting the Intarweb for a refinanced mortage, right?

[Brief aside: Gmail ads is strangely silent on any emails about cancer. It's got plenty to say about childcare options and labradoodle breeders, though.]

Radioactive man

2006-08-16T20:38:00.000-04:00

A few folks are curious to know more about the PET scan, so let me use my wonderkiller powers for good instead of evil for a moment and try to explain what went on.

The injection I was given was fluorodeoxyglucose -- a mix of glucose and the isotope flourine-18. FL-18 is what's known in the trade as a poitron emitter, meaning that the particle it gives off (and thats what makes something radioactive, that it emits some type of sub-atomic particle) is a positron. These are just like electrons, except they have a positive charge, rather than a negative charge, as you may remember from high school chemistry.

These positrons wander around for a few millimeters before meeting an electron and anihilating each other. The result of this little fracas are two gamma ray photons. One of the immutable laws of physics is that on some scale, all forces and energies must balance out to zero. Since the electron was roughly stationary in space, the two emitted photons move off in 180 degree opposite directions, thus having a net momentum of zero.

The PET scanner itself then, is a ring-shaped detector that senses these gamma-ray photons. When it sees two of them 180 degrees apart at the same time, it assumes they are a result of the Fluorine-18 decaying, and that the location of this FL-18 must be somewhere along the line connecting those two gamma rays. Draw a whole bunch of those lines, and voila! You have localized the fluorine in 3-dimensional space.

It is worth noting two things here. First, fluorine-18 has a half-life of only 110 minutes, so it must be made fresh, and nearby. In fact, there is apparently a facility in Sterling, VA, where they have a cyclotron and a bunch of guys with a "time to make the donuts" job who get up early each morning to whip up a batch of this stuff and messenger it out to local radiology clinics.

And we can't talk about radiology and cyclotrons without sharing the story of Albert Swank, Jr, who is trying to run a cyclotron out of his garage in Anchorage, AK. Nuclear medicine is fun, yo!

Trained in a slaughterhouse.

2006-08-15T12:59:00.000-04:00

Had my CAT scan done yesterday. This is a 3-dimensional X-ray machine that produces images of the internal structures of your body as if you were baloney-sliced in cross-sections. On the whole, a much less unpleasant exercise then the PET scan. Except they shot me up with an iodine solution to improve the contrast, and it took 3 tries before the technician could properly insert the IV. Ouch. I'll post some pictures soon.

Beth has identified 3 of the glucose-absorbing structures in the PET scan below (brain, heart, bladder) let me add a 4th. The small black spot on my back is a lipoma, a benign lump of fat cells. Except that ever since seeing these scans it itches like crazy.

Handwash My Delicates, Chemo

2006-08-14T11:16:00.000-04:00

Dan is the original cat killed by curiosity. What's 220 volts of electricity going through your body if it means you can figure out how a monitor works?

So y'all can imagine that a disk full of digital radioactivated internal images of himself has led to hours, HOURS! of perusing, tinkering, and "what's this thingy?" commentary. Dan's unspoken life goal is to prove that he can do anyone's job with 48-hours notice and a Straight Dope message thread. This weekend, he's been busy playing radiologist, poring over his scans and trying to divine what they mean.

Inevitably, the fascination gave way to the reality that this is his body, and there's cancer in there somewhere and he was LOOKING RIGHT AT IT, AHHHHH! Okay, maybe that was me, but still -- y'all, that spinning torso down there? That's Dan and his cancer.

Those dark areas indicate where glucose is being consumed. Cancer cells consume glucose. Now, the heart and the brain are supposed to be dark. The, ahem, pelvic area -- that's where Dan emptied his bladder before going into the scan.

But everything else? Could be nothing. Could be cancer.

It finally got the best of Dan, too. Saturday night he had a dream that they gave him the results of his test. It was some kind of list, and hundreds of "cancer citations" were listed. He was telling me about it early Sunday morning as we were waiting for the kids' cantankerous greeting of the dawn. I'd had my own series of nightmares involving rescuing David from a storm drain during a flood, so both of us were relieved to find ourselves in our own bed after a restless night.

I listened, and thought about it some. I settled on the following comment as appropriately comforting:

"Baby, you're going to have chemo. It's going to go through your entire body. It's not like they were going to spot-treat the cancer. It's a hot-water bleach washing that gets all the stains at once."

There's no longer any doubt in my mind that I am a suburban wife and mother. I now speak in laundry metaphors.

It DOES taste like apple!

2006-08-14T09:15:00.000-04:00

The baruim sulfate solution I had to drink before my CAT scan was much less revolting than I had anticipated. If it had any health benefits at all, I could drink something that tastes like that at least once a week.

Modern technology is AMAZING!

2006-08-10T20:22:00.000-04:00

The bad news today is: I still don't know any more about my condition than before. The good news is: I know WAY more about what my insides look like than ever before. That's right folks, Dan had his first PET scan today. In a nutshell, tumors apparently like to eat glucose. So you starve yourself for 12 hours to get your blood sugar level nice and low, then you are injected with a solution of glucose combined with a short-lived radioactive isotope. Then you sit quietly for about an hour as the stuff distributes itself through your body. Of course, muscles like glucose too, so you have to stay still or your muscles will absorb more than their fair share. Can't talk or it'll end up in your tongue. Can't read or it'll show up in your eyes. Just sit quietly in the dark.

After a suitable waiting period you are placed on the table and slowly fed through the scanner, which is essentially a sophisticated geiger counter that can pinpoint in 3-dimensions where a particle is coming from, then it integrates all of that info into a 3-D map of the concentration of the isotope in your body, which helps pinpoint tumors.

Did I mention you go slowly through the scanner? The scanning took 30 minutes, during which I had to lie perfectly still, or the resulting image would be blurry, just as if you were taking a picture with your camera and your subject moved. And of course, it was a pretty uncomfortable position, too. I guess it was a good thing my nose didn't itch. The reward for all of this sacrifice is: a) your doctor can get a good idea of whats happening inside of you without the mess and inconvenience of slicing you open, and b) before you leave they give you a CD with all of the images on it! It includes some nifty software that animates the frames, so my other browser window is now showing a rotating, 3-D view of my insides shaded by glucose consumption, as you can see above.

Of course, I made the mistake of bringing the disk to Beth's office, where all of her co-workers had to come in and take a gander at my innards. Comes with the territory, I suppose.

I wonder if they'll find the marble he swallowed when he was 7 years old?

2006-08-06T14:35:00.000-04:00

Sometime in the next two weeks, Dan will have three sets of scans done to determine where else in his frame cancer has taken up residency.

1. CAT/PET scans -- both involve ingesting and/or injesting stuff that helps find "masses" (read: tumors) and leaves certain tell-tale signs when it encounters cancer cells. The tumor landscape and signs are read by x-rays and interpreted by a radiologist using a computer and a ouija board.

2. Bone scan -- no clue how this is administered, it's another radiology thing that involved tracking isotopes moving through the bones. This will probably take the longest of the tests. But it's no match for . . .

3. Bone marrow -- Dan apparently missed the part about punching through his hip bone with a big long needle for this test. Shhhh, don't tell him that it's going to hurt like a sumbitch. He's still kind of freaked out about the whole cancer thing.

Tests #1 and #2 will be administered at some radiology facility of Dr. T's choice, and #3 will be done at the oncology clinic on August 17, when the the first two are complete.

Please note that an MRI is not on the menu. That's because Dr. T only prescribes MRIs if he believes the cancer has moved into the brain. He doesn't suspect that's the case for Dan.

Dan will have a heart test (EKG) before beginning treatment just because he's almost 40 and there have been some heart issues in his family. Again, Dr. T doesn't expect to find anything here. It's mainly to assess Dan's health before beginning chemo.

Also, there will be lots of blood tests. Cause, you know, blood tests are totally accurate and helpful and show exactly what's wrong, all the time . . . normal kidney function, my ass.

Not much time to talk -- Dan's cancer wants to make the early bird special

2006-08-05T12:26:00.000-04:00

Early this morning, we had our first visit to Oncology Hematology Associates, PA. The clinic is one of the area's leading facilities for treatment of blood and lymphatic cancers. Seven physicians rotate throughout the practice, seeing all patients. Dan's primary doctor will be Dr. Tiwarri.

In the interest of keeping this brief, I'm not going to get into many details with this entry. What we all want to know is how serious is Dan's diagnosis?

Answer: his lymphoma does requirement treatment, but it will not kill him.

Additional specs: lymphoma is divided into two categories, Hodgkins and non-Hodgkins. Dan has non-Hodgkins. Non-Hodgkins is further divided into stages of progression, with 1 being the least advanced, and 5 being the most advanced. Dan's lymphoma rates a 1. Lyphomas are additionally classified as agressive or indolent. Dan's is indolent.

So while Dan does have cancer, he has very lazy cancer. It doesn't show a lot of initiative. If Dan's cancer worked for me, I would have fired it for napping on the job.

We got the basic information on what additional tests will be forthcoming and what treatment will be necessary if the tests show what Dr. T believes to be true about Dan's condition. His diagnosis is unique in that this type and stage of lymphoma is rarely seen in people under 60.

Three things are kind of bad: since this kind of cancer is systemic, it can be controlled and it can be put in remission, but it cannot be cured. Meaning Dan may have another outbreak at some point in his lifetime.

Secondly, the cancer is most likely somewhere else in his body at this point, either in his blood, his lymphatic system, or an organ system. That's why all the scans and tests are necessary -- to determine where else the cancer may be.

Finally, treatment does mean six months of chemotherapy. The type, frequency and dosage of chemo will be determined by the scan results.

Lazy, old-person cancer -- should have known it.

Together, we're Ogged

2006-08-04T15:45:00.000-04:00

Since the fifth Rule for Cancer apparently is "set up a cancer blog," here we are.

To recap, Dan had minor surgery to remove a swollen lymph node two weeks ago. All preliminary indications were that it was a simple infection that has been trapped in accordance with standard system operating instructions. The biopsies that the lymph node was malignant surprised everyone, from the surgeon to us.

Dan got a referral from our primary care doctor, and we have our first consult with the oncologist tomorrow.

At this point, we don't know a lot, including the details of Dan's diagnosis and what happens next.

Dan feels fine, and I'm making bad jokes. The kids just want to know why they can't have pudding for every meal.

[If you don't read Unfogged, you probably don't get why Dan+Beth=Ogged, one of Unfogged's original writers. Ogged recently bowed out of posting on Unfogged because he was diagnosed with kidney cancer, which resulted in a nephrectomy. Dan's got the cancer, I got the nephrectomy -- hence, our tenuous connection with Internet genius.]

Sober and Malignant

2006-08-03T17:22:00.000-04:00

Monday night we were smoking cigarettes and drinking limoncello on the back deck. Tuesday afternoon I got a preliminary diagnosis of Lymphatic cancer. So here I am now, sober and malignant.