When, not If

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

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.

* 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

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

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

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

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:

A key element of the . . . experience is getting to know your honored teammate - a local blood cancer patient whose courage provides motivation and inspiration - an individual whose challenge is greater then your own.

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?

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.