to lobectomize or not to lobectomize, that is the question

Last Thursday's conference of cancer experts decided that my situation was not straightforward. I am learning that, in the world of cancer, nothing is straightforward.

Pathology determined that three distinct masses were removed from my lung on Feb. 5, but odds are that microscopic cancer cells remain, waiting to grow and spread. Cancer has a lot in common with the dandelions in my garden.

PET Scan images show additional cancer as "hot spots" in my lymph nodes, bone marrow and spleen, but the bone marrow biopsy, blood tests, x-rays, CT Scans and ultrasound aren't conclusive.

Best guess, official guess, is the adenocarcinoma (which was first diagnosed as squamous cell) hasn't spread beyond the left lung, and that the other hot spots are probably lymphoma. Drs. Ho and Evans, backed up by the rest of the conference members at the BC Cancer Agency, want to watch the lymphoma but do no treatment.

What they
want to do is
a lobectomy
(not a lobotomy,
a lobectomy!).

The "lobe" is the upper or superior lobe, and that's most of what's left of my left lung. "Ectomy" means cut the damned thing out and throw it in the incinerator.

Easy for them to say. I say, I'd rather have a bottle in front of me than a frontal lobotomy, a comment attributed to Tom Waites, Dorothy Parker and WC Fields. All three seem likely candidates.

I'd like to know why the wedge resection was the first recommendation. Surely they knew then that there would be a possibility that microscopic cancer cells would be left behind. Why not just do the damned lobectomy in the first place, get it over with and not put me through two surgeries?

Dr. Ingrey says I'm making myself crazy with my "morbid curiosity" about my cancer. It's not an exact science, he admits, and there aren't definitive answers to all my questions. No point in looking for second opinions, because the conference provided numerous second opinions, which all agree.

Say buh-bye to lung lobe. Plan on 10-14 days in hospital followed by three months of recovery. Forget about being a marathon runner, an opera star or a long-distance swimmer.

"Doctor, after the surgery, will I be able to play the guitar?"
"Of course."
"Great! I've never been able to before!"

To be honest, I'm most concerned about the pain. I've never been a wuss, but this past year of procedures, topped off with that agonizing bone marrow aspiration, have left me with an almost desperate resolve to avoid any more. No so desparate that I'll refuse the lobectomy, but I'm not looking forward to it.

Besides, Dr. Ho is pregnant, due to have a baby any day now. I'm reluctant to whine about the discomfort of surgery to a woman who is about to give birth, which is sometimes described as passing a kidney stone as big as a pea. No sympathy there.

I should be happy, honoured perhaps, that some local Christians are praying for me. Two have told me that their prayers will cure my cancer. They are certain of this. Several others tell me that I've been put on a "prayer list," whatever that is. I picture a sheet of lined paper with a list of names and problems:

• Sam - lost his job;
• Debbie - lost her dog;
• Joe - alcoholic crackhead hoarder;
• Mary - house burned down;
• Pete - allergic to Viagra;
• Myrtle - cancer;
• And so on.

I tell these people that it's a waste of time to pray for an atheist, but they will not be deterred.

Some flatly refuse to believe I'm an atheist. Of course, they insist, I believe in God and the Hereafter, I just haven't admitted it to myself yet. Im in denial, but I will see the light, yes I will. Louise Berg surprised me with the information that it's easier to pray for an atheist than an agnostic. The mind boggles.

What frustrates me about all this Christian intervention is the absolute, blind faith that God will cure me because of third-party prayers, even though I'm convinced that God does not exist.

Let's pretend that there is a God. He would be the one who created my cancer, everyone's cancer in fact, because He creates everything. So now a few of His children are saying, "Hey, Big Dude, we think you screwed up on that one, so cure the cancer, willya."

They expect God will say, "Oh, okay, I made a mistake so I'll just change it." The God I learned about in Catechism did not make mistakes, and questioning His wisdom was a guaranteed one-way ticket to Hell. God has His reasons for everything He does.

Or maybe God is like a big, mean kid who pulls the wings off flies to watch them struggle helplessly, earthbound until some insect-eating creature comes along to gobble them up for a quick snack, or until they're crushed by the random stomp of a Size 12, black Dayton boot. 

Many people survive cancer, but I strongly suspect that God has nothing to do with it. It's likely the type of cancer, the individual's genetic makeup and overall health, medical treatment or a combination of the three. I'm certain it's not the work of a few of the flock at Christ the Redeemer Church in Pender Harbour.

Think of it another way. Consider all the people who die of cancer, each and every day, throughout the world. Odds are, some of them are really nice folks, they have friends who are Christians, and those Christians pray for the cancer to be cured.

Why does God not listen to them? Is God pissed at them for some Holy indescretion? Maybe they took His Name in vain (GODDAMMIT!) when they hit their thumb with a hammer? And so He's getting payback by letting their baby girl with leukemia die as punishment? God the drama queen.

In a small way, I envy these devout, God-fearing believers. Imagine the feeling of accomplishment, of joy, of power, when a lymphomectomy is successful and all sign of cancer are removed! Imagine how good it must feel to believe it was your prayers that saved the life of that person! Maybe a bit of an ego problem here? Ya think?

I'm certain of this: An eternity in God's company (heaven) is not a comforting thought. With the least bit of logical consideration, God appears to be a total whacko, and death without an afterlife sounds like a far more peaceful alternative.

scans, gowns and things that go bump in the night

I had a telephone chat the other day with Dr. Cheryl Ho (pictured at right) who works out of the BC Cancer Agency in the Big Smoke, aka downtown Vancouver BC. She's a highly qualified, busy and well respected oncologist, and she talks to me on the phone.

How cool is that? I think of the many hours of traveling I've wasted here on the Sunshine Coast to see some specialist in Sechelt or Gibsons to disclose my birthday and medical insurance number, or to be told, "Your test results were fine."

I'm the one with cancer, but their time is more precious than mine, and the Sunshine Coast is hardly known as a hotbed of medical superstars. But, Dr. Ho talks to me on the phone.

Dr. Ho already has results from the flurry of tests I've undergone these past few weeks: CT Scan, bone marrow biopsy, blood tests and ultrasound, and she's not found anything new or conclusive. In fact, on Thursday, she's presenting it at "conference," a brainstorming session with a radiologist, surgeon and other medical experts, who will focus their talents on my perplexing case.

The blood tests didn't reveal any surprises, the bone marrow biopsy showed nothing startling and the ultrasound didn't identify any lymph nodes that looked as though they would be enlightening in a biopsy.

So, she's thinking that a low-grade lymphoma is likely. Low-grade lymphoma is a non-Hodgkin's (NHL) cancer of the lymphocytes or white blood cells, also known as indolent lymphoma. If low-grade NHL was an animal, it would be a sloth. Very slow-moving and, as cancers go, downright lazy. Some people with low-grade lymphoma live for years, decades even, without treatment. We like lymphoma.

Dr. Ho sees a "spot" in my lung on the CT Scan, likely one or two tumors that weren't removed in my February surgery, although a radiologist will make the call, and the call may be a biopsy to confirm either cancer or some evidence of the surgery. It's a little early for scar tissue, so I'm guessing it's a tumor that got off lucky in Round One.

If it is, I'll be saying goodbye to the upper portion of my left lung (most of it) in a pulmonary lobectomy, followed by a few days in ICU (Intensive Care) and a total of 7-10 days in hospital, presumably Vancouver General. The surgery doesn't kill most people and the recovery period is up to three months. As you no doubt imagine, I can hardly wait.

But enough of that, I want to tell you about the CT Scan...

I've lost count, but I think I've had no less than ten CT Scans so far in 2010, along with numerous X-rays and a PET Scan. A geiger counter would likely register me at the Toxic Waste Dump mark on the scale.

"Take everything off except your panties, socks and shoes, here's a gown, put your clothes there, come out when you're done."

Something needs to be said about hospital gowns. You haven't lived until you've been ordered into one, then forced to parade through a waiting area of other patients, with either your body bizarrely contorted to hold the thing closed at the back, or with your bare arse hanging out.

Brilliant. A sick person, or one with certain injuries (think broken arm) would find it challenging to tie up the front, so, let's really make their day by putting the ties in the back.

In the past few months I've had the opportunity to model gowns at St. Mary's, Lions Gate, Vancouver General Hospital, and the BC Cancer Agency. Everyone has a different style of gown. Sometimes the gown styles vary between departments of the same institution.

They're all slightly different, they're all blue (why blue?) and they all should be supplied with little instruction booklets, with diagrams, to show you how to put the damned thing on.

Most are made of thin, chilly cotton, but I encountered one made of some kind of light, stiff paper. Can't remember where, so the supplied drugs must have been of better quality than the wardrobe.

Some have three arm holes, which results in two backs and one front, or two fronts and one back. You can only be sure that it has three sides, but that's harldy helpful when your body only has two. Some varieties of the Alien Gown (it has three arm holes-- what would you call it?) have ties, and some don't.

The tieless style is guaranteed to shrug off one of its shoulders, leaving the arm hole at your elbow. Remember the guy with the broken arm? Now he's really buggered because that was his good arm, and now he can't lift it to adjust the gown which has effectively become a strait jacket.

No matter how you put it on, you may feel as if you're being gently but firmly garrotted. Although the designer went crazy with arm holes, he forgot all about room for the neck. A little scoop would have made the garment so much more comfortable, but (do you remember platform shoes?) sometimes one must forsake comfort in favour of high fashion.

If you're wondering about the title, there's nothing in this post about things that goes bump in the night. I had been thinking of my room-mate at VGH, but I rather liked him and telling the story would be a little bit mean. Hope you're not disappointed.

like a mushroom

I'm liking this cancer thing. I feel better than I have in a year, everyone is really nice to me and telling me how great I look, and I'm getting away with murder. Sometimes I feel like I could chew off my arm for a cigarette, but that's another story.

The only thing I can complain about at the moment is best expressed with that old saying...

A bone marrow aspiration (a teaspoon of marrow was sucked out of my hip bone) was done on St. Patrick's Day, but a sample of the bone itself was not taken. This was likely due to my screaming and cursing, and I may have threatened someone's life but I can't remember.

Last week I had an ultrasound of my neck, a close look at lymph nodes to choose one for removal. No results from that yet, but I hope to hear soon.

Yesterday I saw my general practioner, Dr. Ingray, who suggested that both procedures (removal of a lymph node and a piece of my hip bone) could be done at the same time, while I'm out cold in la-la land, and this sounds like an efficient and sensible idea. It's also the only way that anyone is getting that bone sample, because I refuse to have it done without general anesthesia.

My oncologist hasn't scheduled either procedure yet, so hopefully we can intercept her before I'm set up for biopsies on two different days in two different hospitals.

Being an impatient person, I'm frustrated that this is dragging on so long. I was diagnosed Jan. 12, two and a half months ago. That's about ten weeks or 80 days ago. I know the lung cancer is adenocarcinoma, but don't know if it's Stage 1, 2, 3, or 4. I don't know what kind of cancer I have in my lymph nodes, my spleen and my bone marrow. I don't know if the lung wedge resection surgery I had Feb. 5 was successful in removing one, two or all three tumors. I don't know if I'll be having more surgery, chemotherapy, radiation therapy or nothing at all. I don't know whether or not to renew a one-year subscription to Digital Photo magazine.

But, on the up side, people are sending me all kinds of information on how to cure cancer.

For example, eating asparagus cures cancer. Who knew? Ironically, I love asparagus and eat it at least several times a week. Have been for years. Very odd that I have cancer.

There are many secret cures for cancer, and they've been around since cancer was identified and given a name. It's usually a pill or a potion, but there are a few really nasty ones out there that involve enemas.

Long lists of testimonials are written by people like Agnes in New Jersey, whose loving husband was on his death bed with only weeks left to live, wasted away to nothing and in terrible pain. The doctors said there was no hope, the cancer was inoperable, untreatable and just go buy the damn casket. Then... the secret formula was administered and, in just a few short weeks, Loving Husband is the picture of health, completely recovered. Secret formula that's been around for decades. Secret formula that's been successful in hundreds of cases, maybe thousands. And, for only $49.95 plus shipping and handling, you can buy the secret formula.

Another popular cure is the one that the big, evil pharmaceutical companies got wind of as soon as it was accidentally discovered by some kindly doctor or maybe even a housewife. So, the story goes, the Big Pharma obtained the formula by some nefarious means for the sole purpose of locking it away where no one could benefit from it. They did this, of course, because a cure for cancer would cost them billions of dollars. Apparently it's much more profitable to let a customer die than to prolong their life for another few decades of spending money on the usual prescriptions that people without cancer buy anyway.

These cures, in the form of medicine, a book or a cd, are usually sold by Dr. McGillicuddy or some such name. A doctor, sometimes, but Google may reveal that he's a doctor of dentistry or veterinary medicine. Or that his diploma was issued by a university that never existed, his scientific research was done in a hospital that never existed and his articles were published in a medical journal that never existed.

One of my favourites is the doctor (a vet) who claimed his knowledge of curing cancer was largely developed from performing autopsies. Somebody did the math and discovered that, in addition to working full-time as a veterinarian, he would have had to have performed autopsies five days a week, six hours a day, for 12 years! Never mind that it's illegal to carve up a corpse without a license to practice medicine (on humans).

Although I do appreciate the thought, I have a hard time listening to an otherwise intelligent person tell me how I can cure my cancer by buying a book of secret knowledge or drinking essiac tea. I will, however, continue to eat asparagus, but that's just because I love it.

• Asparagus Cures Cancer - The myth explained at Snopes.com
• How Quackery Harms Cancer Patients - From Quackwatch.org