curiouser and curiouser

I spent most of yesterday afternoon chatting with two oncologists, Drs. Cheryl Ho and Robyn MacFarlane, at the BC Cancer Research Agency in Vancouver.

You may remember that I have squamous cell carcinoma. Scratch that; there's an updated diagnosis. Now I have adenocarcinoma. Like squamous cell, adenocarcinoma is a type of NSCLC (non-small cell lung cancer). I asked my oncologists if this new diagnosis was an upgrade or a downgrade. They agreed that I should think of it as a lateral transfer.

You may remember that I had three tumors removed from my left lung in a wedge resecetion procedure. Scratch that, or at least put a question mark by it.

The pathology report implies that only one tumor was removed, thus leaving the other two little darlings behind. The tumor referred to in the report was 2 cm in size, and the wedge resection was 8 cm.

The other tumors were both adjacent to and smaller than the first, so I can't imagine how an 8 cm chunk of lung, presumably with the larger tumor in the centre, would miss them. The oncologists will clarify this with the surgeons and let me know.

You may remember that I also have cancer in my lymph nodes, spleen and bone marrow, and that we don't yet know what type of cancer is present there. This hasn't changed, but it is getting curiousier and curiouser.

In my PET scan, the lymph nodes in my chest didn't show any activity (cancer), as they would be expected to if the lung cancer had spread. Lung cancer very often spreads to the liver, and my liver is fine. So, it appears that the other cancers are some other kind of cancer, likely lymphoma. But (and there's always a but), it's highly unusual for two separate, unrelated cancers to pop up at the same time in the same patient.

A bone marrow biopsy and a lymph node biopsy will reveal the identity of every last scrap of cancer in my body, and I'm hoping for lymphoma. If not curable, it's certainly treatable. If it's not metastacized lung cancer, my prognosis for being alive in five years soars from 1% to maybe 60%. Yeah, I want lymphoma!

the beginning

How did it all come to this?

About a year ago, I got very sick. Nauseous, terrible pain in my right side, dizzy, weak and generally debilitated by the symptoms. Over several months I lost over 40 pounds and was mostly unable to get out of bed. Some days, I thought I was dying and other days I hoped that I would.

I had blood tests, urine tests, ultrasounds, x-rays, CT scans, a bronchoscopy and a colonoscopy, and then another colonscopy because Dr. Piers screwed up the first one. Then more blood tests, scans and now occasional trips to the emergency room to be rehydrated and have my electrolytes tuned up.

Dr. Cairns insisted it was IBS (irritable bowel syndrome). Dr. Wadge suspected my appendix. Dr. Goddard considered exploratory surgery to look for scar tissue buildup from an old gallbladder surgery. No one could figure out what was wrong with me, and I was living on Jell-O and morphine.

Then, a CT scan revealed a wee spot on my lung. Dr. Ingrey insisted that this be dealt with before spending any more time on my gut complaints, so the next thing I knew I had a cancer diagnosis and was on my way home from surgery at Vancouver General Hospital in early February, 2010.

Now, you're thinking, back to trying to figure out the gut problem. Nope. The gut problem is gone. Vanished. I have no symptoms whatsoever. I'm eating anything I want and lots of it. I've gained 15 pounds since surgery and am recovering very well from that too. But, it makes no sense.

My surgery was in my upper left lung, not in my lower right abdomen which seemed to be the source of the problem. Bronchial system, digestive system. No connection. No cancer in my lower right side. No rhyme, no reason.

Dr. MacFarlaine nailed it. It's called paraneoplastic syndrome and it occurs, not often but sometimes, in cancer patients, particularly lung cancer patients. Some unrelated, unconnected thing happens somewhere else in the body, somewhere away from the cancer. Sometimes this happens, as it did in my case, before the cancer is diagnosed and can even lead to cancer diagnosis.

never assume anything

So, I assumed that I'd be scheduled for chemotherapy or radiation therapy as a followup to my surgery. Most people have their hair fall out from chemo/radiation, and I didn't expect to be any different. Not a biggie for me. Hair is hair, it grows back and it doesn't hurt when it falls out. I can't imagine having an identity crisis because of temporarty hair loss. At worse, I'll have to wear a hat to keep warm or prevent sunburn.

Hair is hair, but there's no reason not to have a bit of fun with it. My hair is white/grey and hasn't been cut in quite a while so, confident that it was all going to be falling out in a month or so anyway, I cut it.

With kitchen scissors, without paying too much attention to evenness or style. Then, with a ten-year-old package of henna, I transformed it to a peculiar pinkish orange colour. Fun. And it's going to fall out anyway. Right? Wrong.

I may not be doing chemo, or radiation, or more surgery. I may be undergoing nothing more than monitoring, a test or two every six months. This is the best-case scenario, and I'm happy to know it's a possibility but, holy henna, Batman!

Now my hair is the colour of a faded pumpkin and it looks like it was cut by a visually impaired person with a bad case of the shakes.

Never, never ever, assume anything. But, if you must, leave your hair alone.