feeling pressure

I really like that people send e-mails and even stop me on the street to tell me they enjoy this blog. I like knowing it makes people laugh as well as shows them what it's like to be a cancer patient.

I really like my oncologist, Dr. Ho, but I'm thinking she has another, terrifying and intimidating side because of the breakneck speed at which she arranges tests for me.

Last week I had blood tests and an ultrasound of my neck, and when the experts have a look at that they will select a lymph node (at least I think one will be enough) to remove for biopsy.

The PET Scan showed cancer in these nodes, but oddly the ones in my chest, closest to my lung, weren't looking malignant. This could mean that the cancer in my lymph nodes is not secondary lung cancer, but perhaps lymphoma. This would be a good thing.

The next test, on St. Patrick's Day (I wore a green sweater) was a bone marrow biopsy, to be taken from my hip. Via a needle. A big needle. Dr. Ho and a handful of reputable medical websites assured me the procedure would be almost painless.

A local anasthetic would be used, the same type as a dentist uses. I would feel some pressure, some discomfort, but I would be surprised that the procedure was far easier than I had expected.

I admit that I was surprised, and I did feel some pressure, but that's where the resemblance to what I believed and what occurred came to a screeching, grinding halt.

I was led into a little room off the chemotherapy ward of Lion's Gate Hospital in North Vancouver, looking out at a row of mostly elderly patients lounging in reclining chairs, covered with quilts while their treatment was delivered intraveinously. It was a peaceful scene.

I was asked to scoot on my side as close as I could to the edge of the bed, and the metal-barred side was raised. I should have been suspicious when a nurse said, "Some patients like to hold on to the bars." That little comment should have been a dead giveaway that I was not in a happy place.

The doctor was positioned behind me, beside her table of instruments which I chose not to examine. I should have been even more suspicious that there were two other people, one at my hip and one at my legs (well positioned to restrain me). The doctor said that she would explain everything she was doing, and that started off pretty good. I may have imagined that she had a German accent.

"You vill feel cold, from cleaning of zee area." And cold it was, as my exposed hip was wiped down with some antiseptic liquid. Then once more, then a third time.

"Now I vill freeze zee area and you vill feel a little prick." This was the local anasthetic and, yes, there was a little prick as the needle was inserted. This was followed by a feeling of numbness. All good.

"Now I vill freeze zee bone," and she did with another needle and another little prick.

"Now I begin zee procedure," she continued, "and you vill feel some pushing." Although my hip was frozen, I did feel pressure as the needle was inserted into my flesh and pushed right into the core of my hip bone. 

Suddenly the play-by-play description ended and the nurse standing in front of me leaned over, looked into my eyes and asked, rather urgently, "How long was your ferry ride?"

The timing was perfect. She asked the question at the exact moment I was overwhelmed by the most intense, white-hot pain I'd ever felt. I did not answer her question.

I let loose with a scream and a litany of profanity that made no sense whatsoever but certainly conveyed the message that I was feeling more than a bit of pressure. I sincerely hope that all those elderly chemo patients were stone deaf.

The door to the room was quickly closed, no doubt so the chemo patients would not be unduly frightened. I found myself gripping the rail on the bed with all my strength. Had I been able to let go, I would have punched out all three co-conspirators in that chamber of torture, but I was frozen in agony. Tears were running down my face. It seemed to go on for at least several minutes, and those were excruiatingly long minutes.

It finally ended, and the pain receeded. I composed myself somewhat and stupidly apologized for my foul language. The doctor allowed that it may have been more painful than normal because my bone marrow was diseased, and I suppose that was meant to make me feel better.

A towel was rolled up and I was directed to lean back against it, to stop the bleeding, and not move. I was told a nurse would be back to check on me in 15 minutes and, if all was well, I could then go. I waited. And waited. And waited some more. I was sure that far longer than 15 minutes had passed. It seemed like hours. I contemplated getting up and leaving, but decided that it would be best to wait until I was checked out.

Jane and I had arrived at the hospital at 11:20 a.m. and the procedure was slated to take a half-hour to 45 minutes. Jane would be back at noon to meet me at the entrance. When I still hadn't emerged by 2 p.m. she decided to go looking for me. She was told I had been released at 11:30, that I might be in the cafeteria, that my procedure was completed and I was gone.

I'm lucky to have a friend who doesn't hesitate to question authority. She insisted that I wouldn't leave because I had nowhere to go and no way to get there, and persisted until someone finally had an Aha! moment and remembered the little room in the chemotherapy ward. That's where they found me.

With my bone marrow biopsy behind me (no pun intended), I've been hearing from a number of people who had the same procedure and experienced the same, intense pain as I did. When the hip bone biopsy was being explained to them, the words "discomfort" and "pressure" were used, but none were told that it would be painful.

A word of advice: if you need a bone marrow biopsy, demand to be sedated. Maybe it's true that most people find the procedure causes only "some discomfort" but if you're not one of them, trust me, you do not want to experience it clear-headed and wide awake.

Next test to come, a CT Scan to discover if my surgery of Feb. 5 was successful in removing one, two or all three tumors in my lung. If there are any left, I'll be having more surgery, but that will be a piece of cake compared to the bone marrow biopsy.

Although surgeons have a fondness for cutting human flesh, they do their best to minimize the human's pain; they aren't nearly so stingy with the good drugs!

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.

stitch mystery

WARNING
This blog entry includes graphic descriptions of medical procedures. It is not appropriate bedtime-story material for small children and may be offensive to some readers.

In my defense, I was completely unconscious. I’m sure you understand why, after surgery, I didn’t want to be poking and prodding the raw areas of recent scalpel activity. And, having eyesight about on par with a mole, I certainly couldn't see anything in the bathroom mirror. Not that I wanted to. If it was someone else's sutures and incisions, blood and pain, then I'd be right in there to have a look, but not when it's my body. I'd just rather not look or feel or even think about it, thank you, until it heals up.

So, two weeks after surgery, while doing some tentative exploration of my left side, I was surprised to discover a stitch in an area previously covered by a bandage. You may remember how pleased I was to discover that my wedge resection surgery required only one stitch (which was removed a week ago). Oh well, not the first time I’ve been wrong.

Back to the “new” stitch, one of an almost transparent thread rather than the heavy black of the other one. It looked, and felt, like lightweight fishing line. I was easily able to unravel several running stitches until I came to a dead stop. I couldn’t find the end of the thread. It went in but didn’t come back out. Perhaps, I thought, pulling the thread would cause a nearby dimple in my flesh that would indicate the other end.

No dimple, just the opposite, and enough “discomfort” that I soon stopped testing my theory. I was faced with the perplexing situation of a single thread coming out of my chest, seemingly from somewhere deep inside. I told myself, “You can’t get there from here,” and made an appointment at the Pender Harbour Health Clinic.

The nurse appeared with her suture-removal instruments, laid me out on the examination cot and flipped on an startlingly bright overhead light as I explained my little adventure. Using the location of the stitch (immediately below my left breast) as an excuse for my incompetence in both locating and removing it, I pointed out my age (55) and the nature of gravity (it sucks). A couple of years ago (okay, decades), a perkier boob would not have concealed the stitch nor would it have required an extra hand to hold it out of the way while said stitch was located and removed.

This reminds me of a guaranteed side-effect of any serious illness… it destroys every last shred of one’s modesty, often before diagnosis, while various tests are being performed.

I am certain that a substantial number of men die of prostate cancer diagnosed too late because they refused to let another man (the doctor) insert a finger into their rectum. Likewise, I believe that women die because they delayed or outright refused both pap tests and mammograms. And, I totally understand their decision. I allowed myself to be subjected to a pap test every ten years, but I swore that my last one was indeed my last one.

I couldn’t imagine how having an additional person in the room would lessen my embarrassment, so I waived my right to have a female nurse present at the procedure. When you find yourself naked from the waist down, flat on your back with both knees in the air and both feet in chrome “stirrups” designed and positioned to spread your legs apart in a most indecorous manner, you can’t really do much more than grit your teeth.

Enter the doctor, an elderly, bespectacled man prone to unintelligible muttering, carrying a plastic-wrapped, plastic speculum.

I think it was blue and I think the packaging was made by the company that makes those potato chip bags which are impossible to open without scissors.

Dr. Cairns didn’t have scissors, so he did what we all do with a potato chip bag, he pulled it apart. We all know what happens to the chips in those bags; when the bag gives, the contents fly everywhere.

The plastic packaging finally gave, and the speculum went zooming across the little examination room, hit the wall and bounced several times across the floor to come to rest under my cot. I was mortified, but Dr. Cairns retained his composure. A quick study, he used scissors to open the second speculum package.

The next step is insertion of the speculum into the vagina. Then, the instrument of torture is ratcheted open to allow a tissue sample to be removed from the cervix. This is where embarrassment is overcome by physical discomfort. One wonders why the damned thing must be spread open so wide.

The tissue sample is small, the instrument to remove the sample is small, but one feels like room is being made to drive a full-sized pickup truck up one’s vagina. Yes, one wonders. And one grits their teeth even harder while they lie there, reminded of a butterfly impaled on a pin, repeating the mantra, "It’s almost over, it's almost over, it's almost over."

But it wasn’t over yet. Dr. Cairns, with one hand gripping the speculum and the other holding the instrument to take the tissue sample, developed a sheen of perspiration on his face. Then his cokebottle-thick glasses slid down his nose and fell off. I can’t say that he panicked, but he was certainly agitated, one hand still gripping the speculum, as he fumbled around for his glasses, which had landed on the cot between my legs.

Seconds were hours, it seemed, but he finally retrieved his glasses, got them back on his face and completed the procedure. He quickly left the room, without a word, and I vowed that I would rather die of cervical cancer than be subjected to that kind of humiliation again.

The punch line? Several months ago, at St. Mary’s Hospital, a female doctor performed a pap test. It was quick, painless and without incident. However, it’s still highly unpleasant and I do not intend to have another one. Happily, I have lung cancer, something that can be monitored with non-invasive imaging tests involving high doses of radioactive dye.

Okay, back to the cot in the examination room of the Pender Harbour Health Clinic, wondering what’s become of the other end of that suture thread. The nurse did a close examination and some cursory, gentle pulling. She concluded, “Hmmm. Isn’t that odd.”

I agreed. She did more looking and discovered a small knot, a couple of inches away. Aha! But no, this knot turned out to be yet another stitch, and another with no visible source. Very odd. Then, she found a third, also unrelated, stitch with no visible source. Very odd indeed. She decided to call in the doctor to have a look.

Dr. McDowell solved the mystery instantly. “Those are dissolvable stitches,” he said. It turns out that a dissolvable stitch, when exposed to air, becomes hard and appears to be a normal stitch. I silently wondered if dissolvable stitches were made of the same material as biodegradable garbage bags, which are fine until they get wet.

Dr. McDowell told us that the stitches would eventually drop off, after they had dissolved from beneath the surface of the skin, or they could be cut off in a way that would cause them to retract into the flesh, facilitating their disappearance. This latter procedure involved more tugging and pulling, so I told the nurse that, because it sounded like so much fun, I would go home to do it myself.

And, one of these days I probably will. If they don’t fall off before I get to them.