A note on my visit with Dr. B.

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.

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

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

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

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

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

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

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!

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

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

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

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.

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

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!

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!

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?

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

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

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

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.