Man the Battle Stations

Listening for Cancer

2011-01-01T07:27:00.000-08:00

Joan's mother was diagnosed yesterday. She has multiple myeloma, fourth stage. Most information sources don't specify a fourth stage because the subject usually doesn't survive beyond three. The question now is how long has she had it? We think much longer than anyone realized. Both myeloma and osteoporosis attack the bones and marrow so it is hard to distinguish. Dr. Y, the oncologist, saw her several years ago and owing to her age simply told her to "go home". She was 80 then, so the disease has probably been at her for 8 years. All considered, she's done very well. The downside is pain. There's plenty with this disease and Phyll has endured the worst. Sometime soon they will move her to a palliative unit to finish off her days. She's ready to go. She's been very up front about that, telling several family.

Tch! Tch! Bad Boy

2010-10-09T07:39:00.000-07:00

I screwed up! A week ago, when I pulled out my blood test forms from their dusty storage place where they'd sat since June, I discovered I had missed having the requested blood tests for August and September. The etchings on my calendar showed only a mid October appointment with Dr. Y. The previous pattern for blood tests and appointments had always been to get a blood test either the day before or the very morning of an appointment. How many times had I made the long, early morning drive to the lab at the Jubilee? Seems my mind had prearranged this oversight and the highlighted, penned note at the top of each lab form which clearly said "For monthly testing" had been ignored. Oops! I slipped in, a little sheepishly, to the local lab for the October test, as if I was the irresponsible kid who had neglected to do his homework.

Yesterday the doctor's office phoned regarding my October 13th appointment. "Would you mind moving your appointment to November 3rd?" I was asked.
"I guess this means there's no hurry! My last test must have been fine?"
"Looks like it." the nurse said. "See you in November."

A Receding Memory

2010-06-04T07:30:00.000-07:00

Stuff like "blood count, rituximab, lymphoma, white cells, red cells," are receding in my memory. On Wednesday I met with my oncologist after two months of daily therapy with vitamin B12. The big word was NORMAL. All my numbers were normal.

Since I've been absorbing B12 I've wondered if that issue had been with me previous to the cancer. I guess I'll never know but I have suspicions. I was having most of the symptoms of deficiency before I knew about the cancer. Even the faulty appendix could have been connected. The "liver of a man with bad life style" was how the technician in Poland described it as she viewed my ultra sound. Was it a liver wanting B12? The single constant complaint I've had these past two years has been "dizziness". Has it been the result of fatigue? Another B12 symptom!

It's great to speculate but let's get on with the leftovers and dealing with the grumblings of old age. My life will be blood checks once a month, daily B12 pills under the tongue and not thinking about visiting the cancer clinic until October. I'm off an running as fast as my bad knees will carry me.

Nothing is Ever Simple

2010-03-18T08:18:00.000-07:00

Two days ago I had another bone marrow sample removed from my body. "We'll be able to tell if it's the lymphoma or the drugs affecting your blood count," said the doctor as he extracted his hollow tube from deep inside my punctured butt. "It really looks like murky blood. Don't worry the pain will be gone in a day or two."

"You're saying the lymphoma could be causing the low count. I thought it caused the high count?"

"It could have moved into your bone marrow," was the reply.

For 24 hours I was back in limbo land agonizing over my future on earth. It the cancer was back, how could it be treated in my bones? If the rituximab was suppressing my white cells, would the condition ever heal? Maybe I wouldn't be given the drug again. Maybe I'd be going back into chemo. Maybe a marrow transplant was the only solution. Maybe, maybe, maybe .... Ugh!

Before I'd gone for the marrow removal I'd done a little research. I was convinced I had a condition called neutropenia. As the doctor made notes beside me I spotted the scribbled word on my chart.
"That's what I looked up this morning!" I said, pointing with smug satisfaction.
"Neutrophils are one type of white cell," he said. "Yours are too low, hence neutropenia."

The following afternoon Dr. Y phoned to deliver the news. "No lymphoma," were his first words. Relief wafted around me like a warm bath. "The rituximab isn't in evidence either but you have a Vitamin B deficiency showing probably from malabsorption."

So let's see! I have neutropenia or low white cell count, caused by Vitamin B12 deficiency, caused by malabsorption, caused by atrophy in the stomach, caused by (take your pick) old age, chemo damage, or miscellaneous infections. My single annoying symptom is on and off fatigue. My solution, take daily Vitamin B12 pills and pee yellow! I feel better already.

Going Down... too far!

2010-03-14T08:34:00.000-07:00

I jumped the cue the other day (Friday, Mar 12) and had my blood tested two weeks early. I've been having dizzy spells and overwhelming fatigue. My worst fear was that the cancer was seeping back. Turns out the reverse in true. My blood count has been knocked down below normal by some unknown force. It could be an infection like sinus, cold, flu or even the healing of my nose. It could also be leftovers from rituximab which is designed to suppress the white cells.

I spoke with Doctor Y after the test results were in. If my blood count hasn't improved by Monday, I'll be off for another bone marrow examination. The answer to what causes the low count must be hidden there.

Meanwhile, life goes on. At least I now know the cause of my light-headedness. It comes and goes. It doesn't hold me back much.

Nose Job

2010-02-06T07:34:00.000-08:00

I submitted to the knife at the Vancouver Skin Cancer Clinic on Wednesday. It was a nine hour marathon, mostly waiting with the other eight or so individuals with similar problems. There was lots of time to compare notes. I was surprised to discover most people were returning for a repeated treatment. It's a one day, snip, test, snip, test and reconstruct procedure. My nose was sliced six times, each time a little more taken, until all the "basel cell" had been eliminated.

The final reconstruction took about an hour. A piece of fresh skin was removed from over my clavicle and sewn into place over the nose. All through, a cauterizing tool kept the blood vessels in check and added a little olfactory ambience. I was able to watch the nose being excavated by crossing my left eye, which happens to be a very nearsighted eye, and could focus perfectly. As the hole in my nose grew, I was reminded of those dentist visits when the drill enlarges the cavity and the tongue dives in and feels around thinking, "Man is this huge!" From my one eye view the hole seemed enormous. Just before the reconstruction was to begin I was left alone in the room. I hopped up and took a photo of my diminished appendage. Look at your own risk!

With any luck I'll post the finished view in a week or so. I go back next Wednesday for the follow up and to have 50 plus stitches removed. The shoulder hole was laced up with dissolvable thread. The surrounding skin will gradually stretch to fill the gap. At one point, both the doctor and nurse were busy sewing over me. Threads fluttered over my eye lashes, the nurses head was down close to my gaping shoulder. I was the zombie having his body pieces sewn together before he rises up and walks!

The Mind's Unrest

2010-01-20T07:09:00.000-08:00

My mind often dwells on how my body feels. If I'm winded going up a hill is it because the cancer is seeping back? If I feel too hot or too cold is my blood the reason? It was only two weeks ago that I was assured all my numbers are normal. It's my mind that needs some chemo. I may not be able to age gracefully.

Three Month Refill

2010-01-05T06:43:00.000-08:00

December 28th I got very positive blood results ie. normal in all the columns. I received a rituximab infusion on the same day. All done, no comment for three more months.

The man in the chair next to me was having his first chemo for Non-Hodgkin's. He'd lost weight and suffered collapses before the diagnosis. I was reminded again how fortunate I was to have had the early blood tests in Ukraine!

Living in the Fast Lane

2009-11-21T07:23:00.000-08:00

We've just returned from a five day excursion to Las Vegas. Our package gave us an amazing, eighteenth floor room at the Mirage which looked over the main entrance with its pools and volcano. Each night, beginning about seven, the volcano erupted with a fiery show of burning gas jets. Later at night we could expect to hear the pirates at Treasure Island yelling their war cries soon after the eruption finished. It was homage to the excesses Las Vegas is famous for. We were totally immersed. A walk from our room to the outside air included a one hundred metre hallway to the hotel hub and a super fast fall in one of six waiting elevators. What can I say? It was life in the fast lane!

One year ago, when I first confronted the cancer head on, I didn't expect to make another travel plan. Things looked pretty glum! What a contrast! Life goes on! I'm truly thankful!

On the plane leg from Edmonton to Victoria, the 50-something, overweight man next to me suffered some kind of attack which weakened and frightened him. The attendants hooked him up to an oxygen bottle. He was first off, escorted by paramedics. He had been planning to take a rental car to friends in Sooke but knew that was off. "I'm worried about getting back to Edmonton," he said. He'd had a heart attack within a year or so and thought this current problem was related. Joan wanted to help him cancel his car rental but in the surrounding milieu of attendants I was hesitant. She said, "When you were sick I was happy to have anyone to help." That stopped me. She was right. She visited Budget and gave them a head's up about his condition for which they were grateful. Good deed done!

About Being a Survivor

2009-10-26T07:59:00.000-07:00

I was moved by this story of a much younger person dealing with Non-Hodgkin's. (http://www.redbookmag.com/health-wellness/advice/surviving-lymphoma)

I wondered, as I read, how tough life would be if I'd gone through chemo as such a young age. My neighbour survived the disease in the 1970s, after dealing with it in her early thirties. Ethan Zohn , winner of Survivor Africa a few years back, has had to go beyond chemo to stem cell transplantation. His life will be forever changed as will mine. How many more cases will I hear about before I die?

Off and Running!

2009-10-08T07:31:00.000-07:00

My reprieve from chemo, that I reported last time, got extended from 30 to 60 days. Life has almost returned to normal, including my body with all its chemo imperfections. Yesterday I got an intravenous top up of rituximab, the man-made antibody, that costs $3500 a dose and is made partly from mouse parts. I probably said this before but I'll say it again. Don't bad mouth mice, they're nice to have around! Rituximab, I'm pleased to report, doesn't cause any noticeable side effects. It's not a "chemical" like all the others. My next refill is three months down the road, which is plenty of time to allow my body to forget past horrors and focus on the fun of living. For two years I'll visit the clinic every three months for the rituximab booster. After that? Hmmm! I guess I'll be considered in full remission.

This condition of slow-growing Non-Hodgkin's Lymphoma never really goes away. The drugs simply repress its vigour. It will be with me all the rest of my days just like bad knees and a diminished memory. Who can relate?

All the indicators in my blood were normal yesterday, except one. I have a low lymphocyte count, caused by the cure ie. the chemotherapy. It could be a year before normal levels return hence I'm open to infection. I'll be taking H1N1 and standard flu shots. I've made almost a whole year without a sniffle. Touch wood! With a little luck and a lot of hand washing maybe I can make another.

We've become very aware of all the cancer around us these past twelve months. A day never passes without a reference in the news. Countless dollars are thrown at the cause and yet the incidence increases. It's especially sad when children are affected. But there is hope. Many people are cured and I'm happy to count myself among them. Maybe one day soon we'll discover the root causes and prevention will be the key. In the meantime let's all support the science as best we can. I know I'll be forever grateful that a scientist somewhere put together rituximab.

A Thirty Day Pardon!

2009-08-11T08:06:00.000-07:00

Yesterday (Monday Aug 10th) I was scheduled for yet another transfusion of life-giving agony but received a reprieve at the nth hour. Where once my blood analysis numbers were too high for life to go on, now they are too low to accommodate more chemo. This is good! I have an entire month to strive toward normalcy. In the meantime my only concern is infection. No visits to China, no classrooms with coughing children, no necking in the back of the theatre.

I hope my brush with cancer is coming to an end but my connection to it is forever. I've never been more aware of the trauma it brings to people's lives. I've had an open search for the word 'lymphoma' on Twitter for several weeks. The number of mentions is staggering. The interference in lives depressing. We may be stuck with this disease for generations.

A couple of days ago I went paddling in my kayak to raise money for cancer. I felt privileged. I'm sure I was the oldest paddler and probably the only one doing chemo. All twenty-four boats had special loved ones they were paddling for. The day was wonderful. The inlet was a sheet of glass. The sun came out late in the morning. We couldn't have ordered a better day from Amazon.com!

I've had a lesion on my nose for about a month. I found a reference in the 'instruction pamphlet' that came with my last set of fludarabine tablets. "Reversible worsening or flare-up of preexisting skin cancer lesions has been reported to occur in some patients..." No doubt this was me. I'd been scheduled to have the same spots removed just before the chemo started but had to postpone. It's been a month since the fludarabine and the nose spot is finally healing. Ah! The power of the chemicals. The GP who saw me on my last clinic visit looked at the lesion and suggested it was healing because of the chemo rather than being enhanced by it. I have my doubts. Time will tell.

Last night we had a man over for dinner. We'd never met him before but he knew of my chemo. As he took my hand he said, "Oh, I wasn't sure if I should shake your hand." It took me aback. Maybe I should flash white silk gloves and wear a face mask.

I just discovered the short paragraph "Loose Ends" I wrote almost one month ago to the day but for some reason didn't post. It's part of the 'chemo record'. May I never forget!

Loose Ends

2009-07-10T20:52:00.000-07:00

Am I getting better? Today I'm as close to normal as I've ever been. Something I'm 'on' is working. I'm guessing the rituximab has been most effective. My research shows it is "a genetically engineered chimeric mouse/human monoclonal antibody" which binds and destroys Non-Hodgkin's cells. My thanks to all the mice out there as well as the scientists who brewed it up! Like any of these sluicing chemicals, there are risks, but, so far I seem to have avoided those and they diminish the longer you use the stuff.

Give Me a V!

2009-06-30T07:36:00.000-07:00

Here's Blarny, our adorable dachshund. I'm sure he brought me luck.

Yes, the V is for victory! The chemicals have finally struck a vital blow against the lurking big C.

My first request of the nurse at yesterday's chemo, was to see the results of the previous day's blood test. She brought them to me penned on the back of a napkin! This didn't instill great confidence. She was off to do someone's bidding while I looked closely at the numbers. The first one caught my attention immediately. My WBC (white blood count) was 6.7 Could this be right? Normal was between 5 and 12 but I'd been showing numbers between 70 and 90 since January. I was sure there was a mistake. Probably a decimal point error, I'd be happy with 67, that would still be 'down'.

I asked Carolyn, my nurse, to check again. "Maybe it's a different system of recording," I said, "I know some labs use different indicators. Could it be 67? Maybe check against my last reading a month ago?"

"You're right, I'll take another look."

The pharmacist came by about the same time and I discussed the numbers with her too. "It looks fine but I guess you better get it checked," was all she said.

A few minutes passed while I puzzled over the figures on my precious napkin. I chatted with my neighbour, Gord, who was also finishing off his 8th treatment. Doing chemo is a hell of a thing to have in common but we chatted up side effects and naturopathic treatments.

Carolyn reported shortly. "It's right," she said. "You're reading about normal. You should celebrate, the chemo is really working for you."

"Wow! So if I'm cured when can I finish with this?

"That's a 'doctor' question. You're booked for another one in August."

I mulled over all this new information. Keep the pressure on the cancer cells! Wack it to 'em! With an end in sight I can handle this with ease.

I had one number that was TOO LOW! That's a switch. My platelet count needed a few more notches. It gets demolished by the chemo and must regain normal levels between treatments. I was being granted another week free of my 'hero chemical', fludarabine, until my platelets recovered. Fludarabine! Will I remember that name a year from now? I better make a plaque for my wall.

Life looks a little bit better now! Most of the waiting is over. There are fewer mysteries. Maybe eventually I'll label my condition with a specific tag. Will I be in remission or cured? Will I be back for more treatments? One step at a time. I'm content to savour this good news and move forward smiling.

Sneaky Diversionary Tactics?

2009-06-21T07:23:00.000-07:00

This colourful dragon settled long enough for me to capture him.

Unraveling what causes symptoms can be a little discombobulating. I had an unexpected, major dump of fatigue two days ago just as we were about to leave on a trailering trip. We unpacked what was packed and I found myself on the couch for two days with little energy and a lot of angst. What was happening? Was the cancer rearing again or was it something else? Didn't I usually feel better and better as my latest chemo day receded into history? I began checking my temperature twice a day in case of some unknown infection. I wondered about everything I was eating and drinking. Caffeine was a culprit. No more allergy pills. My feet turned incorrigibly icy! It was as if the side effects of chemo were coming back with a vengeance.

I began to suspect my Essiac tea. I checked the web, thinking maybe I was sensitive to one of the many herbs. Nausea seemed plausible but not fatigue. I decided to quit the Essiac anyway. How else could I tell?

It's now the third day after the crash. I had no tea last night or this morning. I'm feeling much better. It's day 21 after my last infusion of chemicals. It looks like the tea was the culprit- but wait! What's this? My foggy, early morning mind was mulling over previous chemos and I went back to check my calendar. There it was. Day 17, 18 and 19 always showed a recurrence of fatigue albeit not as dramatic as I'd just gone through. Maybe retuximab or some other chemical still lurks around inside even now! Ah! The mystical, vapoury life of a druggie! Oh how I long for the return of a cleansed and drug free body! Today I'll live Father's Day. Tomorrow I'll begin the tea again.

Going Up

2009-06-09T08:43:00.000-07:00

My last chemo treatment was more than two weeks ago. I guess the novelty has worn off. Writing seems to be a chore. I've faced this page a couple of times but have contracted severe 'writer's block', no doubt brought on by the chemo. One excuse that comes easy- blame any character flaw, bad language, or body breakdown on the chemo! Nice to have a ready made reason for bad behaviour! I can hardly wait for and opportunity to burp in someone's ear or swear at the postman. Hey, maybe I'm up for sharing seal heart with the Governor General!

During the two days following this most recent smash of drugs, I thought this rotation was going to be sissy easy! Only rituximab was injected and no prednisone was part of the session. "Ah! Normal naps and sleep!" Each morning all I had to do was pop eight tiny fludarabine pills with a single gulp and plenty of water. Life was looking kinda rosy. Summer was breaking out and never ending sun filled the days. Oops! Midway through day three, with 24 pills and other sloshings synthesizing inside me, I was struck with a fatigue like a smothering cloud. I made friends with the couch and settled in to let the constant welcome naps run their course. It was eight days later before life began to return to something near normal. My bowels stopped protesting, my feet warmed, my fingers slowed their numbing and the bouts of fatigue came farther apart.

I'm in awe of the number of drugs available to use against cancer. http://www.chemocare.com/bio

When I questioned Dr Y about the change in my regimen, he was happy to point out that there were "many choices in the arsenal." It seems that if one doesn't work we search around to find one that will. It's a bit like bobbing for an apple. They're all out there floating around, easy to see, easy to touch, even easy to identify. But which one will let your teeth grab hold? Which one should you choose?

I've quit drinking Essiac Tea until eleven days after the chemo. I had a short discussion with Dr. Y about this. The reasoning goes like this. If a food contains antioxidants it could interfere with the impact of the chemicals which are expected to destroy the cancer cells. There is evidence that some patients taking mega doses of vitamins don't respond as well to chemotherapy. It's expected that after 11 days the chemo has run its course and my body is busy rebuilding antibodies, new cells etc. Maybe the tea can be effective during the interval until the next dash of chemicals. Whatever, I'm convinced that something which tastes so bad must be good for me!

We've been especially sensitive lately to things around us that might be dangerous to our health. There was a recent publication reported on CBC with an interview and in the local paper that highlights all the items around us that are entering our bodies. 'Death by Rubber Ducky!' Is anything safe anymore? The worst culprit seems to be microwaving in plastic, something I've done many times and is probably still done by thousands. Even pop cans might create problems with the substance used for their inner lining. Who knew pop cans had an inner lining? I thought a can was a can was a can! Yikes! There's no doubt that modern science creates as many problems as it solves or should that be 'more problems than it solves'? Time to curl up in the foetal position and hide in the closet but don't forget to remove all the synthetic fabrics first cuz they 'off gas'. And you thought it was your armpits!

Strange but True

2009-05-29T07:47:00.000-07:00

I was very surprised to discover my blood count had dropped ten points during the week I WAS NOT ON CHEMO! What's that about? Surely the Essiac tea couldn't work so quickly!

Dr. Y had no explanation however he did say some people recover without the help of chemo. Amazing! Here I sit with yet another thing to wonder about. Could I just simply heal just like I heal when other bugs attack?

I've agreed to begin a new round of chemo with a different regimen this Monday. That leaves me another three days to feel good. I've been considering NOT taking the chemo as scheduled. Why not wait a little longer and have another blood test in a few weeks? I wish I'd thought to bring up the idea when I was in with the doctor but Monday will do. As Dr. Y has said several times, "It's all about symptoms when we don't know exactly what we're dealing with."

More unexpected good fortune... my hair can begin to grow again. The new drugs don't cause hair loss! Looks like I'll be back to brushes and combs again. Funny! I've begun to realize a few advantages of total baldness. Super 'easy care' of course. All the hats fit. Great in the swimming pool.

Ding Dong! Round Seven

2009-05-25T16:19:00.000-07:00

This is a tough entry for me to draft. I'd hoped I'd be over this problem and back to a normal life and yet here I am still embroiled, still without solutions, still waiting. I take up the saga following my last blood test May 21.

No doctor appointment is necessary. Dr. Y phoned to tell us the rituximab treatment hadn't worked. My blood count continues to hover above eighty, unchanged from January when this horror show began. He's looking for another drug combo for the pending treatment which begins Friday the 29th. Apparently there are many drugs yet to sample.

In part, this was the good news! I have a week off. No drugs for a whole week. Add that to the final recovery week after the last chemo and it's like a two week armistice.

How do I feel? I have signs that things aren't right. Too much exertion and I'm light-headed as if I've inhaled smoke or gas fumes, but, it's not a nice high when you know its origins. Odd, but the feeling doesn't overcome me when I'm swimming. It's as if being horizontal, in spite of heavy exertion, cancels out the my air head.

Still, I've checked frequently, and find I have none of the typical symptoms of lymphoma (lumps in arms and neck, weight loss, fever, night sweats, itching all over the body, loss of appetite, feeling of weakness, breathlessness along with swelling in the face and neck) No day goes by when I don't monitor my body for any of these. Perhaps they will gang up and pounce. It will make a difference when one appears. It will give my struggle a focus and perhaps the medical profession will make a positive diagnosis.

For a few days, my life has been near normal. We took the 'Barbie Camper' for a 24 hour outing to Weir's beach. No frolicking in the surf but then neither was anyone else my age. We moved the chairs to catch the sun and enjoyed watching other peoples antics. At home I'm doing yoga and working in the garden just as I've always done. I've dropped the gym to avoid picking up bugs, but still manage a couple of visits to the pool for my usual 24 laps. All the horrors of chemo have receded except the numb fingertips. Even my feet are finally warm!

My thoughts often dwell on how I got this disease. Life style has always been a point of pride with me. I've always felt the quality of living is far more important than the length we live. My body has always been very fit. My curious mind comes along for the ride. How then, did I catch this nasty, lymphoma thing? First, I microscope my genes. No answer there. There's no history on either side. Was it something I ate? Maybe! I've dumped back my share of junk over the years. Was it the air I breathe? Maybe! I've drawn in gobs of sawdust dust and fumes from a million things over the years. Was it exposure to something? Maybe! Since this began I've suddenly noticed how every second thing I touch is made of plastic. Could this be the culprit? Is it where we live? Maybe! As you see, it doesn't take much to get the mind running mad with theories, but that's all they are, just theories. Greater minds still have no solutions. It would be wonderful if prevention was something simple, instead, we must live on with ever increasing incidence approaching 25% in some countries.

About a week ago I began drinking Essiac tea. It's been around for many years and reportedly been used successfully to treat many cancers. The name spelled backwards is Caisse, the lady who first began using it about 1920. http://www.healthfreedom.info/Cancer%20Essiac.htm It tastes like something that might scare out buggies. Looks a little like stagnant dishwater and smells faintly of swamp! I'll be checking with Dr. Y to see if it interferes with his chemicals. I've always been skeptical of 'herbal remedies' probably because my whole life I've been conditioned to think modern medicine has a pill for everything. Perhaps my dilemma has brought on an attitude change?

Staying Down for the Count

2009-05-13T07:47:00.001-07:00

Wow! It's been two memorable weeks since I last blogged. Once again I'm asking myself why I've taken so long to get back to this. Last time the delay was from fear of repeating the same old symptoms and side effects. This time it was simple lack of will. I was down, way down. No energy, no interest in anything except the foetal position, whining more than a husband with a head cold, meaner than a spurred horse without hay, but propped up, at least for five days, by a cattle prod of prednisone. I didn't want to write anything and if I had, there would have been nothing in it to make a person happy!

The wicked culprit in my current druggy adventure was rituximab, which required a 'slow drip' procedure to administer. We arrived at the clinic about 10 am and struggled home again at 5:30. It was long, stressful and exhausting with a many minutes of boredom. We took a chair deep inside the clinic with window views to the parking lots on one side and all the comings and goings of the clinic on the other. My numerous trips to the bathroom, pushing my five-wheeled intravenous machine, required careful negotiation of obstacles. We read the news, played rummy, sorted videos that we never watched, fiddled with the ipod, ate many snacks, fed our parking meter and chatted off and on with volunteers and nurses. Time passed. Patients came and went. We stayed on and on while my body gradually absorbed a quart or so of rituximab. "We can't go too quickly," the nurse said. "We need to keep an eye on you."

I was fortunate. I never suffered the frightening side effects that many endure. Several times I was asked if I had tightness in my chest or shortness of breath. "Usually I can look around the room and pick out the people on rituximab," the nurse commmented. "They're heads are down and they're asleep." Joan and I were in the middle of a card game.

The next day, Tuesday, wasn't too bad. I downed my final prednisone pill. Wednesday afternoon the fatigue began to settle in. I was down for the count and each count was a day. The slump seemed an endless repetition of tossing, sweaty nights, and near comatose days filled with inactivity. Today, I'm a sluggish bear emerging once again into light and life.

Let's get on with all the interesting things in our lives. Our children and grandchildren, our TV shows, our lovely food, our bursting Spring yards, our news of flu, politics and weather, our email, Facebook, Twitter and blogs. Let's celebrate our lives and our freedom. Let's live and let live.

Outflanked

2009-05-01T07:26:00.000-07:00

Nothing has changed. I've endured five infusions of chemical teas only to find my blood count remains almost exactly as it was last January. A stalemate should be followed by a new game, so game on!

Today, this warm and sunny Friday, I begin a new course of CHOP with a different drug for dessert. The new one needs savouring. It takes six hours to administer so I must go back Monday. Drip, drip, drip! I'm told by Dr. Y, that this new weapon from the arsenal can be rough, initially, but after an hour or so things settle down. My three weeks with it brewing inside me shouldn't be much different from the hour to hour I've faced so far.

My case is rare. The blood count shows a problem, the spinal test pointed to lymphoma, but I remain without outward signs of the infection. The doctor will present my regimen to his colleagues as an 'case of interest'. Perhaps some new strategy will emerge. I'm reminded, once again, how individual each cancer is, how many are out there waiting to take hold. More than thirty in the lymphoma area. Is there a body part that is immune to this creepy disease?

Yesterday was a bonus because the chemo was postponed. I had the whole day feeling more or less normal. What a treat. Kim and I, worked in the sunshine to spread clean sand over the patio pavers. Joan cut wire to improve our fence against the encroachment of nature ie. dogs, cats, deer, rabbits, squirrels and raccoons. Ah yes! More battles on more fronts. Onward!

Chemo's Believe It Or Not

2009-04-27T19:54:00.000-07:00

A few weeks ago I noticed some unusual depressions on the moons of my thumbnails. Seemed odd. I couldn't think when I'd smacked them with a hammer or caught them in a door. Anyway, they matched, how freaky is that? I recently solved the mystery.

Call it 'thumb gazing'. It's like 'navel gazing' for druggies. A state of inner peace is attained from focusing on an engaging point of interest. My eyes were locked on the intriguing ridges and valleys of my thumbs, when it occurred to me that there was a pattern. I could count the stripes. Five! Exactly the number of chemical intrusions I've suffered. Wow! Each time I've had 'chemo' my thumbs have created another ridge and valley. It's like my very own 'tree rings'. How cool is that?

Turns out our bodies often react to stress by fiddling with our hair, finger nails, skin etc. Thank you my dear friend Google.

Two more days before I lie down for infusion number 6. I'd like to say 'I can hardly wait' but it would be a blatant lie. I'm looking very forward to getting my life back.

I'm having suspicions about Benedryl. It was suggested by my medical team. I think it may be contributing to my lightheadedness. With so many other possible causes, who can really know? I'm discontinuing until I can be sure.

I placed two freshly, planted pots high up on our deck yesterday. Joan confronted a spitting, unfriendly raccoon about 11pm, and attacked it by using a bottle of school glue as a projectile. She claims she made a direct hit. I figure our masked friend got angry with vengeance and retaliated by pushing over one of my pots. It's clear case of juvenile vandalism and won't be tolerated. I'm looking to take my grievance to a higher level, perhaps with the power washer cleaning up his nesting tree. I'll probably need clearance in triplicate from our municipal office and a visit from the arborist. Life is never simple.

Close Encounter of a Wild Kind

2009-04-12T16:12:00.000-07:00

"Did you see the letter from the Yank complaining about the drugs in our streets?"

Drive along the right street and it's all there to see. Needles, tubes, arms and faces glazed with ecstasy.

We finished off some downtown shopping with a stop for a fancy coffee. I ordered a truly exotic, Barista special called a 'Banana Mocha'. A plant image floated on the creamy surface: maybe a leaf, a fern, a banana, a flower but definitely a fantasy. The first burst of flavour was addicting. We munched a healthy spinach-feta muffin while the coffee soothed our buds and teased our noses.

I rarely drink coffee these days. Kind of kicked the habit a few years back when I thought it was turning my plumbing into an uncontrollable backwater. These days a little cuppa tea is all I need for a pleasant buzz. Today's mocha was more than a gentle hit. Combined with my 'chemo' thinned blood, this slug of caffeine soon had me floating like a helium balloon whispering through cloud nine. I was as good as gone, as the doorway shooters and head hangers in the alleys. Whoa baby! Slow down the spin!

It's a bit of a long way round to get the high. I mean who wants to purge a coffee habit, enlist on a suitable chemo treatment plan, then take a double whammy of mocha just to reach a state of wild ecstasy? I suspect a few doorway dwellers might if they had the chance.

It's All in the Details

2009-04-09T20:01:00.000-07:00

Our new fence and potting area. Bring on SPRING!

It feels like an eternity since I last wrote. Do I have nothing to say? No, that's not it. It's the repetitiveness of chemo symptoms and waiting! How many times must I remind myself that my fingers and toes are numb to distraction or the strain of reading closes my eyes to a squint? I've discovered how a person who is 'different' must feel. Some people expect to confront a 'chemo invalid' especially since I shaved the head. Thank goodness that hasn't been me. Oh sure, I like a nap, but who doesn't at my age? Stop the whining Dave! Get on with it!

Three days ago I had my third treatment, or at least that's how the count is recorded at the clinic. I've really had five drug flushings but the first two were literally 'down the toilet' since they weren't effective and the drugs were changed. Officially I was rebranded from CVP therapy to CHOP. The first 'chop' was the nasty red stuff, DOX, with burning in and burning out. It was obviously effective. My lymphocyte count spiraled down from about 57 to 35. Normal range is 11 to 40, so briefly I was hovering in normal. DOX is a scary drug. It can do damage to heart muscles if large doses are accumulated over a life time, so careful testing using 'nuclear photography' determines each patient's heart adaptability. Mine was borderline so I was switched to an alternative drug called Etoposide. Thank you Lord! This one doesn't burn on the way out!

After much web reading I've come to the conclusion Etoposide might work for me. It may be slower, but it certainly is safer. My current lymphocyte reading is 51, a little up from the 35 I reached with the wicked DOX, but still below my high of 60 back in January. We do it again. We wait and see.

I'm getting used to the naked head and a first nation street person told me it's a safer scalp for tomahawk wars! I'm building a portfolio of famous 'baldies' either shaved or natural and I've learned how to run the razor all over my head. I expected the hair to fall out at the roots but apparently not. Seems to be a roughness there that needs taming every couple of days. The beard is still growing and eyebrows are holding their own. I figure my new stream-lining has reduced my lap time at the swimming pool by two or three seconds.

We've been busy around here fighting 'damn de deer wars'. All the neighbours are raising their fences in a concerted effort to barricade out these cud-chewing jumpers. It's a fine show of community solidarity. Man against nature! Gotta love the concept. Nothing like a common goal to bring folks together. Reminds me of the blizzard of '96, everyone, friendly like, helpin' each other dig out an' stuff. Shucks! Got tears in my eyes thinking about the wonder of it.

One further note on the Non-Hodgkins. Turns out my neighbour had the same invasive beast back in the '80s. Detection came late for her, she reached stage four, (I'm in one) and it took a year of chemo to bring her right. Tough go, especially with two little kids running around, but she lives on. I can only hope.

The Dog Days of Battle

2009-03-27T07:34:00.000-07:00

"Excuse me while I check my calendar."

I see I'm on day 10 of the 21 day cycle. I've rallied through the prednisone highs of days 1 to 5 and fallen on day 6,7, and 8, like a man without water in the desert, tongue-lolling, eyes slitted and mind glazed with clouds of fatigue. Looking back at my notes it's obvious that the way I feel is a matter of record. I have a three cycle history now. On this day, number ten in the sequence, I should expect fatigue, muscle cramps, numb fingers and toes, bowel issues etc. Let me check. Yes they're all there.

But something is changing here. I think my point of feeling 'good' is arriving sooner. Today I wrote 'going up!' which in my 'chemo' lingo means I'm no longer a bag of fatigue. It's at least two days earlier than last time. Should I choose to believe my body is adjusting to the chemicals or should I choose to hope that some recovery is emerging? It's a no brainer. I'm on the mend.

We left a question with the professional librarian at the BC Cancer Agency. She was to find an answer to our question regarding the difference between Doxorubicin and Etoposide. The first was the nasty red liquid that goes in like fire and comes out still glowing. It is so toxic it must be measured cumulatively over all life's treatments. At a certain point no more will be administered because it could cause heart complications. In my case, tests showed I might have bad reactions so I was switched to the more friendly Etoposide. The librarian sent us one research paper on the 'subject'. It might as well be written in Ukrainian. (Cytopenias due to extensive bone marrow infiltration, autoimmune hemolytic anemia or thrombocytopenia, or hypersplenism) In Dr. Y I trust!

I did glean one glimmer from battling through the research paper. No body is created equal. Each treatment must be tailor made to the body. The effects of treatment vary as much as the bodies themselves. It's obvious why medicine is often called an'art' rather than a science.

On a lighter note, I've been building some webpages dealing with the 'times of our lives' and thought I'd share with anyone interested. Why do I do this? I think Joan summed it up when she said, "He doesn't do Sudoku or crosswords like normal people." Whatever the reason, I'm grateful to be living in this intensive time of bottomless internet information. It's fun to put pieces together that produce something meaningful. Don't be alarmed if you discover something unfinished or not working, that's part of the great puzzle I need to solve.

Milestones (still have 3 decades to go, yikes!)

Pop Culture (check the music links)

The Mother of Bad Hair Days

2009-03-20T10:05:00.000-07:00

Dr. Y repeatedly said, "Cut it!" Other patients were less blunt, "Well good luck trying to hold onto it." My sister said, "Well you wait, it'll be about the second set." My mother would have said, "Well you know we're all different. Wait and see." I suppose I subconsciously covet my mother's advice or maybe it's a stubborn streak. I made it to the end of nine weeks with nary a hair out of place but NOW...

First I noticed my hair brush clogging more than normal. I mean, sure there's a little leeway here. I mean, I'm losing a few hairs but so I should at my age. One morning it was more than a clogged brush. There was a noticeable 'dusting' of kinky curls on the sinks rim. I began to whine a little. "I think my hair is falling honey." That's not the entire truth, it was more like, "I'm finally losing my damn hair!" I began to think my dream of ending this with a 'dork knob' (pigtail on a man) would not be realized.

At lunch one day a few curls found their way onto my Subway sandwich. I commented about them to friend, Graham, who politely added. "There's a few more on your shoulders." On closer examination I realized the ones in the sandwich were 'beard' hairs. Yuk! This had gone far enough. The next morning the beard was buzzed to a fuzz style, my kind of urban, sex symbol look, but I still wasn't convinced the top layer wasn't just 'thinning'. I suppose it's a macho thing like not asking for directions or avoiding HOME TV.

A day later, with water dripping off me in the shower, I noticed a 'clump' clinging to the tub's side and another stuck to the curtain. Uh, oh! This is serious. As I sloshed my hands through my hair they came away with little nests between my fingers. "Whoa!" I thought. Disaster. Bigger clumps washed down. I had a free fall happening. I began gathering and stacking the clumps on the tub's edge for later cleanup. My wet head suddenly needed protection from further water damage. No more vigorous rubbing, just a light pat with a small towel. Stressed eyes checked the mirror for obvious holes.

I kept the remaining crop through that day while I went for my fourth chemo treatment. Yet another nurse pronounced with certainty, "Thou shalt loose your hair with this drug!" I stubbornly defied the odds through the remainder of the day and evening. Prednisone, the great eye opener, took over my life. About 3am, when I should have been doing floors or washing walls I attacked my hair with barber scissors and my wireless beard trimmer. I couldn't face another hairy shower and realized going to the swimming pool would be impossible. It was a personal, mind-boggling, middle-of-the-night adventure I shall never forget. A new me appeared in the mirror, one whom I hope I can learn to like. Maybe I'll feel macho enough to mount a gun rack in my pickup. Hey, maybe I'll get a call to Hollywood. A lot of bald guys go that route. For now, I'm into funky hats and living with the extra receptor of vitamin D.

The Sweet Taste of Victory

2009-03-19T06:53:00.000-07:00

The field lies strewn and layered with thousands of innocent reds and whites. The enemy cowers in disarray from the unrelenting onslaught. The battle will be remembered in history as the great turning point of the war. Jubilation and hope fill the air.
----------------

Dr Y was smiling as he entered the examining room. We exchanged pleasantries but I was like a kid with a wagging tongue. "I hope you have good news." I blurted.

"Yes it is good news. Your numbers have gone down about 10 points and I've reviewed the pathology with a colleague. We feel confident yours is a low grade lymphoma. We'll be aiming for a complete remission."

"Great. I knew it. I've been feeling better these last few days. A couple of times I was pretty much normal."

"Good. Well we'll be staying the course with the chemo. I'll have to send you for a heart test. It's a special nuclear..."

"I've already done that. You should already have the results." Oops! Something amiss! I'm surprised then a bit disappointed. It's not the first time a test result has been AWOL here.

"Ah! I thought I sent you for that last time. I think I looked at it but I better go check. Give me a minute. I'm sure it's fine but we need to check."

Dr. Y ran off to fetch the record and I was left happily contemplating my good fortune. Now the end of all this would be clear. Now we'd no longer be waiting, wondering, blind!

"This is not as I expected," Dr. Y said as he walked through the doorway. Your reading is just in the normal range. I can't give you Doxorubicin. It can be hard on the heart. We'll have to switch the therapy to (drug word of unknown origin)."

"Will this new drug do the same thing?" I ask. I'm thinking, 'Oh God don't make me start over.'

"Yes, no problem. We should get the same result." Later I would wish I'd asked why all patients don't get the second drug.

"Well I'm not sorry to see the end of that skin-burning red stuff. Yikes! So how many more times do you think?" This is my life's biggest question.

Without hesitation Dr Y says, "Probably four." My mind immediately calculates to the month of June. Egad! But it will be easier now, knowing where the end is and following the progress. I'll have almost one week out of three where I feel more or less normal.

"What's the story on the nuclear result? Should I be concerned?"

"No it's not an issue. But some hearts don't tolerate Doxorubicin." He smiles. "I don't want to give you a heart attack."

"How about the hair loss? Does the new drug act the same?" I've already impressed the Dr. with my still, standing mop of gray and told him I planned to leave it until the end.

"Cut it! It's gone!" he answers without hesitating. "Save a lot of cleaning up around the house!"

I'm not convinced. I'll stay the course until the last hair drops in the bathtub. Thank God for Draino!

Nuclear Testing

2009-03-13T07:24:00.000-07:00

"Everyone who receives Doxorubicin has a 'in vivo', nuclear procedure to check heart function," Dr. Y explained. This was the red skin-burner that turned my urine pretty pink and reddened my other end as it exited. Makes agent orange seem like candy floss. "Doxorubicin puts extra strain on the heart so we need to check yours can handle it. I'm sure it's fine but we run the check routinely just to be sure."

"Mr. David Foster," the white-coated attendant called from the hall near the waiting room. It was my turn to file out, smiling for effect, nodding acknowledgment, tailing behind like a lamb to slaughter. My anxiety level had risen after reading the wall posters. My dose of radioactive isotopes, produced so effectively at Chalk River, would be as high as the scale measured, 'but this is not a safety concern' I was assured.

"Which arm would you like your intravenous?" I was asked. Now here's something I know about. I proffered my pitted, right arm and she twisted the tourniquet and began stroking to engorge the vessels. (Go with this Wayne) They jumped to attention like well trained eels. "I'm giving you a radiopharmaceutical that will take about 45 minutes to absorb. You won't notice anything." As I walked out, my sleeve slid down over the tiny, flapping port into my blood stream that had been taped flat. The big hit was yet to come.

I'm sure if the crowd in the hospital, Tim Horton's cafeteria had known my blood was coursing with a radiopharmaceutical, the place would have emptied in panic. I munched my Apple Fritter doughnut in pleasant anonymity, added extra money to my parking pass then wandered back to 'nuclear' like a window shopper in a super mall.

The radiopharmaceutical is a collector of sorts. A 'clingon' if you will. The isotopes were mixed with a tube of my tainted blood in a very low-tech fashion by tilting and twisting the syringe while it remained attached to my arm. Squeezed back inside my bloodstream they became a glowing blob of party goers as they surged through my vessels. Five minutes later, in camera room three, I was laid out and trussed like a calf for branding while the 'gamma camera' swooped in for pictures of the veinous festivities. The party goers get tracked all the way to my heart from three different angles. If they get there fast enough I pass.

I was two hours total and that included pleasant chats with nurses and my friend George who happened to be there for a similar test. On the way out I walked through the emergency and found Victor waiting on Edith. I'm thinking this place is becoming a social club for Gold Card holders!

My body enters a hospital and immediately begins to receive signals of smell, light and unusual, sometimes disquieting images. "Am I sick?" it asks as if doubting it's own senses. What can I say? "Suck it up and take a Valium! We'll soon be back in the sunshine."

Extreme Cold Feet

2009-03-11T07:52:00.000-07:00

Painful cramps around my ankles jerked me alive from the fog of deep sleep. I jumped from my bed into the thick, black of night and stood, wonky, on wobbly legs. The agony slowly abated. "Where are my toes?" I wasn't feeling normal down there. "It's that damn 'chemo' again, desensitizing my extremities."

I did a short war dance to restore circulation while my hazy mind mulled options. If I went back to bed this problem was sure to return. I ran my fingers over the chill of the disembodied feet. My foggy thoughts reeled. "Hey man, you're not feeling the cold here!" I climbed back into bed with feet swathed in warm socks and willed my mind to feel what I could feel. Could I feel? Crike! It was as if I was dismembered from the ankles down!

Several minutes passed as sleep eluded me and I constantly flexed my toes and shifted my legs to assure their existence. Oh how I needed a heat source down there. Oh for Mama's hot water bottle or a warm puppy. This situation was well beyond counting sheep or mind-playing on a sunny beach. I had to deal with this. Obsession was taking over.

There is a prehistoric, electric heating pad stored beside my bed in a tangle of wires and dust. I reached down in the dark to confirm that it was there. Would I dare to place this in my bed? It hadn't been used for years. Could I sort out the tangle of wires without flooding the room with light and turning our bedroom into a carnival? I found the control and rolled the switch. A glow of light flooded the wiry snarl beside my bed. My clock wire was in the mix. For several minutes I worked over the bed's edge pushing and prodding, gradually extending the twisted wire until the pad could reach my chilly feet. And there was warmth and welcome sleep!

Today I'm off for 'nuclear testing'. Don't ask! It's something to do with checking the heart to make sure it can handle the chemicals without self-destructing. I suppose I'll be asking questions as I'm poked, connected and laced with ions. Fun is in the eye of the beholder. Who the hell said that?

Holding the Middle Ground

2009-03-06T11:15:00.000-08:00

Day ten sucks! I'm remembering the stereotypes of 'doing CHEMO' I had before I started. Here's the drawn, dragged out wrinkled dude looking a little emaciated without enough energy to lift a limb. Apparently it might be true. I'm thinking ambitious thoughts of projects and purpose but haven't been out to run in the sunshine.

I used some Aeroplan points to buy a camera off Amazon. Yes, you too, can perform this miracle, but take a stiff drink to reinforce your patience first. Frustration is built into the process. It's not for the, how you say, 'faint of heart' or technically challenged. Expect a few puzzles and hidden obstacles.

Step one is to navigate the Aeroplan website and purchase the necessary 'gift certificates'. The clever Aeroplan folks assign a 'key' number to use on the Amazon site. Amazon offers every piece of merchandise ever conceived by man so your job is to know what you want before you arrive there. The actual buying was easy! Am I surprised? The delivery was free within a few days. Now I have this excellent Canon camera to replace my other perfectly good Nikon which is stored in the drawer with yet another 'older' model. But you see, when I eventually get back in my kayak, the old camera will work fine and give me peace of mind when I'm clicking over water!

To be fair, this new camera has a stronger zoom, more pixels, and a dynamite macro... that's 'closeup' for those of the Brownie Hawkeye generation. I'm adding a 'new camera' shot to all my blog scribbles. How else can I use make use of useless collections of artsy, fartsy shots? I'm pleased I have the energy to click the shutter and download the images. Keeps the sagging mind engaged.

Numbing is Nice

2009-03-01T07:34:00.000-08:00

This morning I awoke to discover extra tingles in my extremities. The nurse warned me that for some the numb travels beyond the fingertips. I've checked my back, that's 'numb bum' and my front that's 'numb nuts'. My nose, my ears? Hey! Where the hell are they?

There must be some advantage to being numb, at least for a short time. I could be one with the frostbitten winos on Winnipeg's Portage and Main. I could wade Willow's beach like it was a Maui stroll. I could heat Campbell's in the can and stir it with my fingers. I could rub against Angelina without raising a stir. Life could be good in the numb.

What will I do? Think I'll follow the ladies curling final and go to the gym.

Seeing Red

2009-02-27T08:57:00.000-08:00

It's not what you think!

As the nurse injected me with a huge syringe filled with pink 'tropical juice' she politely almost apologetically said, "Don't be alarmed. This stuff will turn your urine red."
"Wow! Nice! Looks like Gatorade."
My mind clicked into movie mode. I'm outside peeing in the snow creating lovely red Kanji characters. A Japanese man beside me is doing likewise. Mine are gorgeous red on white. His are miserable, sick yellow. As we pass the bartender on the way back into the bar my companion inclines his head in my direction as he says,
"I have what he's having."
"I don't think you want to do that," I say.
"I take my chances." he says with a smile.
I see my movie title in flashing neon: PEEING RED

The syringe was one of two, big enough to baste a turkey. She tapped into the already existing line leading into my wrist valve. (Next time I'm going check on getting the valve installed permanently) "I'll be feeding this gradually." she said as she pressed the plunger a few mils. All the tubes and valves hanging from my taped and puffed flesh had my wrist looking like a mad scientist lab experiment.

We read the specs on the new drug while we waited. "Oh! Expect to lose your hair with this one." the nurse continued.
"Do other cancers use this?" I asked.
"Almost all breast cancers."
"Aha!" I thought. "This is the one my lady friends get. Maybe now I'll have my cancer signature. Better plan my new hat." I noticed the literature still said 'may cause hair loss or thinning'. Nothing new there. Wait and see. At least a few more days of brushing.

While I relaxed, reposed, feet up, downing pills with a latte chaser, serenaded by the sound of the drip, I read Scott Fitzgerald's, The Curious Case of Benjamin Button on my IPOD. Needless to say the movie, which I have yet to see, took many liberties with the original since the story is only a thirty minute read. The IPOD was great. It can be done easily with one hand while the other is intravening and the type size can match the old eyes. Because the lines are short, it's easy to keep focused and page turning is a breeze. There's a handy little bookmark feature for interruptions. Time will tell. I don't see the world switching over soon but for traveling, office visits and lineups it has a place.

Yesterday I was filled with optimism. The 'agressive NHL', if in fact we discover that is what I have, can be completely cured. The slow advancing types often linger for life. With a little luck I will rid my body of this nasty affliction for good.

For the record, I did see red yesterday over a computer glitch which I have yet to solve. Sound familiar? This title was for everyone on one day or another.

The sun is out. I'm off to enjoy my prednisone high.

Battle II: the standoff

2009-02-25T09:58:00.000-08:00

I must admit I'm a little down about today's blood results and prognosis. It would have been quite uplifting to be told the drugs were performing as expected and lymphocytes counts had returned to normal. Part of the feeling is quashed expectations. You expect a result and when it doesn't materialize disappointment rears. My counts continued to go UP which means the six weeks of drugs have had little affect.

It would appear my condition is not as simple as was first suggested. What might have been a 'low grade' Non Hodgkin's, may be a moderate or 'agressive' type. Dr. Y is going to consult with a colleague to get a second opinion. They will "go over the pathology" again, which means looking at the original slides made from my spinal fluids back in November. It's apparent that these slides are not a simple picture book. Their meaning is open to discussion and interpretation.

But it's not for me to debate or interpret. For me it's more waiting in the shadows and enduring a third slosh of drugs. A new kid is on the block. It's a 'D' word this time, called Doxorubicin, obviously a name contrived by the same group that came up with the CVPR combo. Full marks for originality and unrememberability! I hope I'll remember it as the one that turned my count around.

Dr. Y was more forthcoming on this visit. "Sorry to be the bearer of bad news." For the first time he handed me a printout of my blood counts. "We have to make a change of tactic." I saw columns of meaningless numbers. "Here's what I think has happened." he said as he drew a diagram on the white board. I saw us getting closer to the truth. "We don't know for sure but you may have moved from the 'low grade' category to the 'aggressive type'. His chalk made circles around and around on the board over "aggressive". "We will change some of your drugs." He handed me a set of papers. "This treatment is called 'CHOP'. It contains another drug."

And tomorrow I suck up my 'CHOP' and wait.

Being Normal

2009-02-20T07:41:00.000-08:00

I feel great this morning. I can sense I'm going to have trouble discovering something to write. That's a problem isn't it? When all is fine we often say nothing. 'News' generally tends toward the dark side. Our media fills to overflowing with bad stuff. It's our price for being human. But not me, not today!

I was thrilled to discover Barack and I have something common. Yesterday as he stood at the podium in Ottawa he said, "I love this country!" Almost made me teary. Good on yuh, Barack. I'm with you all the way as are the rest of us eh! Keep smiling, keep saying nice things. We'll soon 'Love thy neighbour' again.

I've been tracking CHEMO side effects on a calendar, making comparisons from one treatment to the next. I'm ahead of schedule this cycle. I have almost a full week of 'being normal' ahead of me. Last time I only marked the last four days as 'feeling good'. It's fantastic how special a few days can feel. I hope that long after the treatments are done, I can continue to cherish many days as I will these few. It's the ol' adage come to test its truth: 'Your health comes first'

Finally Fatigue

2009-02-13T07:27:00.000-08:00

I've been waiting for this. I brought down my NHL manual and checked chemo side effects to be sure I hadn't missed any. Turns out 'fatigue' is a biggy. I remember Dr. Y... asking, "Any fatigue?" to which I was proud to reply,

"Not really. Maybe a little when I do something rigorous."

"No not that kind of fatigue," he replied. "You'll be incapacitated, weak like a puppy. You probably won't want to leave your house."

So now I know why my eyes feel strained to point of closing. The muscles are struggling. I'm overwhelmed by a desire to flop down on the couch and close off everything.

Yesterday I made a simple plan to venture to the shopping centre to visit three stores. I parked in the middle of the lot and walked a large circle. It's hard to believe I could perceive such a small excursion to be such a formidable obstacle. Such relief to find the sofa again.

I watched two old Seinfeld episodes yesterday and found I could still laugh. Jerry had a girl friend with 'masculine' hands which he couldn't stand to have touch him. Yuh gotta love these absurd ideas?

A Day Log: Waiting, Whining, Wondering, Wanting

2009-02-09T07:08:00.000-08:00

I'm in a vacuum waiting for the end of chemo. My days are filled with thoughts of how to fill the time. Here's a day to look back on and remember the good with the bad.

5am
I'm fully awake monitoring my body for new sensations. I feel the pricks of pain in my jaw but they're not new, I remember them from last time. It's the 'lockjaw' thing. The pain passes after the first few chews. I'm happy to have slept so well. Thank you Nitol. I purposely stay in my bed until 5:45 thinking about the day to come.

5:45am
My body is up and in the shower. I take all the time I need. There's no hurry. All systems are functioning but my head is clouded. I feel the deadness of my finger tips. I take my temperature. Who invented such a thermometer that measures my well-being in four seconds? Amazing!

6:15am
I'm at breakfast downing extra prunes and the day's first apple. "Keep the bowel functioning", a nurse warned. Down go the final prednisone, thank God. Tomorrow! It will be better without having to down these nasties.

6:30am
I'm checking the news and email. There are devastating fires in Australia. Are they affecting any of the cousins? I'm off the news and exploring the Keynote program. It's an amazing piece of software. Reading is beginning make my eyes close against the brightness. I'm closing one eye to get relief. This will be a tough day if I can't stand to read.

8:00am
I head down to the TV. I click on CNN, change to CBC, try BBC and CNBC but finally settle on Shaw Daily while I begin my Yoga routines. The Yoga is a tiny 'upside' to this whole time warp. My joints haven't felt as good in years. I can see and feel the improvement in my stretches. I change channels frequently looking for anything of interest. I find the interview with the Hudson River pilot and watch the devastation in Australia. It's in Melbourne, not near the cousins.

8:40am
My head has cleared after the exercise and decide on the spur of the moment to vacuum the entire house. Done!

9:00am
It's a fine, bright day. I have little jobs in mind. I take out the laptop and synch the ipod to remove all the Christmas music. I don't like hitting shuffle and suddenly hearing Silent Night. While I'm poking around I notice that 'books' are available for the Ipod. I'll check that out later. My eyes want to close against the light again.

9:40am
Even though I feel like crap, I'm going to go outside and poke in the garden. I'm chilled, so first I fire up the Wii and play a set of tennis. My skill level is hovering on 1500, sometimes I gain a few points, sometimes I lose a few. I'm warmed and ready to do some digging.

10:00am
The air is crisp and wonderful. I attack a rotting root with my Polaski Maddock. The outside air and exercise give my spirits a lift. I can feel my energy level waning as I whack and dig but it's better than the torture of the eyestrain. I'm pleased with the progress on this project. My neighbour and I compare body notes. He tells me about his carpal tunnel operations. I enlighten him re. the ugliness of prednisone.

11:15am
I'm on the sofa reading the paper through one eye. The strain is agony. At intervals, I shut my eyes.

12:00 noon
I'm pleased the morning is gone. I make a small wrap for lunch and finish another apple. We will visit Joan's mother for a buffet dinner at 5ish. We decide the departure time will be 3:40pm.

12:30
I'm busy exploring this new idea of reading on my Ipod. An free App called eReader has given me 'Tarsan of the Apes' and the 'Last of the Mohicans' to t try out. I also have the Curious Case of Benjamin Button. I can't believe these entire books are all stored on the Ipod! I can see myself happily reading these while I wait somewhere.

1:20pm
Naps haven't been easy with the drugs but I'm determined to try. Much to my surprise I more or less succeed. My mind faded to another place for awhile. I climb off the sofa feeling pleased.

2ish
I have a couple of 'puttering' jobs in the workshop. I lop a piece of carpet in half and replace my old workshop doormats with the new stuff. It's busy work but I like it.

3ish
Joan and I are watching an Oprah show about beauty treatments. Yuk! We click the remote to some interesting items on Antique's Roadshow. It's a celebration of their 35th year on television.

3:40pm
Joan drives because I'm whoosy and don't feel alert. We head for the buffet at the Wellesly. I eat a small plate but manage a butter tart for desert. My jaw cracks and my throat is sore. I know how a zombie feels. It's much too hot in the dining room.

6:00pm
It's a relief to arrive home. I play a couple of sets of tennis on the Wii to clear my head.

7:00
I'm watching LOST on DVD. I bought the entire 2008 season so I can follow all the complexities of this series. It's great! The plot is never linear but constantly 'jumping' from present to future to past. I hope I can catch up with this year's episodes. Apparently they are even more complex.

Cousin Chris phones to check my status. Some of his company employees in Melbourne have lost their homes in the fires. His company is feeling pressure from the economic downturn. Cousin Doreen calls. Uncle Les is doing fine.

9:00
Time for a Nitol. Will I sleep tonight? I set myself up in bed with my copy of 'The Great Train Robbery' and enjoy the comfort. It will be after ten before my eyes want to shut.

Confessions of Prednisone Junkie

2009-02-06T07:19:00.000-08:00

The room was without windows but the door had a peep hole and the fabric walls were soft to touch. A long, narrow table sat in the middle of the floor, with a 42 inch, panasonic flat screen at one end playing a CNN special about torture techniques in Guantánamo Bay Detention Camp.

The interrogatee was comfortably seated in a leather desk chair, opposite the TV, trying to mask his horror but his furtive eyes told all. His arms rested loosely on the table but his hands seemed to twitch and flex involuntarily. His head frequently bobbed from side to side like a clucking bird.

The interrogator was slouched on a wooden chair to his right, working controls on a wide consul of slide switches and dials. He wore a clear, white name tag, 'Arnie Wordich. "Jus vun momen", he said in a thick Baltic accent. "You vatch." The flat screen suddenly changed to a waving, red line running horizontally across the screen. "Plees use glove," he said, placing a single, heavy glove on the table. He got up from his seat and placed a helmet on the patient's head. Both the glove and helmet were connected to the consul with a band of wires. "Ve ready now. You tell truth, you see good line. You lie, you see zig-zag. OK... you know?"

"I understand. I know zig-zag. Go ahead"

Arnie adjusted a couple of dials then looked over at the patient. "You Meestah Daveed yes?"

"Yes, my name is David."

"Vy you come in here vith hat on?"

"Well all the other cancer patients wear hats to cover their hair loss. I felt I wanted to belong even though I didn't lose my hair, so I wear a hat to the clinic to cover my hair."

"Ven you sleep?"

"Sleep? Yikes! You mean no sleep. I wake often through the night. I get up and cool down. I read. My eyes shut but I don't sleep."

"You eat OK?"

"My mouth has a dead feeling, like I'm not tasting properly, but I do eat and I have an OK appetite."

"You know 'complexion'?

"You mean my skin? It's great. Something happens to change it when I use prednisone. Spots clear up while I'm on it. Trouble is they come back again as soon as I stop."

"You tire?"

"I have energy I can't burn. Trouble is don't want the energy. I'd rather be asleep."

"How you see?"

"My eyes? Hmm? I'm really sensitive to brightness. I almost need sunglasses inside. Feel like I have terrible eye strain when I read for long."

"How your knees?"

"Interesting you should ask. Usually my knees are a problem climbing stairs, kneeling and stuff. Not on prednisone. Trouble is I think it'll all come back with a vengeance. This drug must be a hell of an anti-inflamatory."

"You got nose run?"

"All my allergy problems disappear with this stuff. It's great, but who needs the trade off for all the bad side effects? I'll take the runny nose."

"You got bowel?"

"Ha! No I'm good. I eat extra apples and prunes. Feels kind of dead down there though."

"Zig-zag, Meesta Daveed. Zig-zag"

"Let's talk about something else eh? Just two more days left on this stuff."

Counting the Casualties

2009-02-05T07:48:00.000-08:00

"So what do the numbers say?" I asked my Doctor.

"They aren't significantly different. Sometimes it takes a second cycle to bring down the numbers."

"But they haven't gone up so I suppose that's good news. I feel great today. Much better than before the treatment."

"Good! Glad to hear it."

"I suppose I'll be receiving the fourth drug this time. Um.. the R one, whatever it's called?"

"Rituxan... no we won't give you that until we see the count go down. You'll get the same three as last time. We'll take a look again in three weeks."

"What exactly does the predisone do? I find I dread that stuff more than anything else. I hate the 'super high' feeling and I like napping."

"Well, it's an anti-inflamatory. It supresses some ordinary functions of the cancer cells and lets the other drugs work. Important."
------------------

And away I went to enjoy the day. In the short interval from 10 to 11:30, my sample had been analyzed, my weight recorded, my diagnosis considered and my treatment confirmed. Tomorrow they pump me full again.

'Thank your lucky stars!'

2009-01-31T07:31:00.000-08:00

My mother would often intone the expression "Thank your lucky stars!" when fate had doled out an escape from one of life's lesser threats. Once I showed her my thumb that had been bloodied by an unwieldy hammer swing. "Thank your lucky stars!, she said with a lecturing voice, "Next time you'll be more careful."

Yesterday I was reminded of my mother's faithful advice when a friend at lunch said, "Then it's true you wouldn't have known about your condition if you hadn't got sick in Ukraine?"
"It's true," I said. "I might be sitting here right now grumbling about symptoms and not knowing the real cause. The blood test in Sevatopol set the wheels in motion." Thank My Lucky Stars ie. TMLS

A friend who had undergone extensive chemo using the dreaded prednisone, described the effects he had endured over a few months of usage. Weight gain and unsightly fat deposits, pains where they shouldn't be and flightiness with insomnia. My whining about five days of energy bursts and no naps seemed a little trivial by comparison. TMLS

Each time I go to a medical facility for yet another blood-letting or whatever, I'm in awe of all the equipment and sophistication. I can't help compare with what I experienced at the Ukrainian hospital. Dirty blankets, decaying mattresses, dirty rooms, ancient equipment etc. How can I be so lucky? TMLS

By most accounts, I should have lost my hair by now. It's nearing the end of the first cycle of three weeks and I'm still filling in grey as ever. I stopped trimming my beard, thinking, "Why bother, it'll be gone soon anyway." Perhaps I'm one of the few who doesn't suffer this most distracting of symptoms? I shouldn't say this too loudly! TMLS

Several times Joan has commented on how 'lightly' I've been suffering the side effects of CHEMO. I expected much worse than I got. How can one not expect 'bad' when all the 'this might happen' stories are on the internet, flapping in cyberspace like dirty laundry with pictures. Am I not lucky I can add a few positive words to the ragged pile? TMLS

I am truly thankful for these next few days. My blood is rebuilding. I'm clear-headed for the first time in weeks. I have energy. I drank a beer without feeling like I'd keel over. Life is good. TMLS

Wheel of Fortune

2009-01-26T07:18:00.000-08:00

Each morning, as I step out of bed, I spin the wheel and my nerve tentacles dart out to all parts looking for damaged goods. Yesterday they discovered a weird condition at the tips of my fingers. They were numb, like the glowing numbness left after a fast thaw. Remember those unplanned, down and dirty, snowball fights without gloves. You've got the picture. Fortunately there's no pain, just a tickling reminder. In warm water they appear to glow like the famous ET digit. Perhaps I can use them to replace Telus.

Isn't taking drugs all about super sensitizing. Maybe I'm onto something here. My eyes are half closing against bright light. Think positive, maybe X-ray vision follows. My skin takes on cold at such an alarming rate a square inch exposed is torture. Could I sell this technique to the CIA? What the hell! All this mind wandering banter. I'm nowhere here. My mind is playing at keeping me amused.

How many times have my thoughts returned to dwell on the length of this treatment? Four months should be nothing in a life so long. But how do I feel I ask myself. Oops! I need to face another day hanging about, avoiding long reads, avoiding extended prolonged physical activity, avoiding long sits at the computer, avoiding large meals, avoiding... avoiding

On the up side, my cycle (not menstrual as some have suggested) has reached its mid-point today. My body is flushing like a stuck toilet, pushing out the drug residue, leading me to equilibrium once again. My head has more clarity, my muscles more responsivness, my energy greater reserves. I'm quickly, returning to normal minus a few cancer cells.

We attended the matinee at the Belfry yesterday for an excellent play called "The Real Thing". Many laughs but quick, intense dialogue that never let up. I was exhausted by the final curtain but happy to be there. Fortunately no coughing or sniffling emerged around us.

Turn Up the Heat!

2009-01-22T06:44:00.000-08:00

Words can't express the joy I felt when I woke up yesterday morning and realized I wasn't still grumpy and depressed. I thought, 'Thank God I'm not facing three months of ugliness!' My head had cleared. Sleep was once again my friend. The 'prednisone' hangover was history at least for a couple of weeks. Life was looking good again. I can do this!

My body has made some new connections to temperature. Everyone knows the feeling of becoming uncomfortably cold then the relief of re-entering a warm space. Everyone knows how a piece of exposed flesh turns numb and then pains as it reheats. With a little help from drugs you can do constant reruns of the experience plus add some extra thrills. Our comfortable 20 degree house felt like frostbite on my exposed hands. It was as if wind chills were seeping through my sweater. Bed was worse. The covers, which were heavier than I ever need, seemed to sprout leaks. I was sure I could feel drafts wafting under my blankets. Cold parts wouldn't reheat normally. The warm glow from my core ever so slowly moved out towards my skin like flooding liquid. Always I seemed to be feeling both the cold and the hot. It was the stuff of bad dreams.

Last night I grabbed a dream which lingers still. The window to our mind? I think not, but oh how the mind can reel in disconnected memories and leave them open for interpretation. Maybe I should be going to a seance or getting my tea cup read. "And David had three dreams... and in the first dream he saw...

I'd been invited to a beach party along a wild piece of coast like Sombrio or Long Beach where the waves were massive and the gravel on the high beach gave way to hard sand near the water's edge. Far out, tufts of kelp were visible in the rolling swells. I was being invited to go 'swimming' in the surf and the host, a bearded yuppie like myself, had already suited up and entered the water. I could see him bobbing among the kelp. I was hesitant but tempted. A woman, probably the hostess, was leaning over a big log, chin on her hands, looking at me for guidance. She said, "If you don't have coverage I can give you insurance for the day. We keep it available for all our guests." Papers were trapped under one of her elbows and she proffered a pen. Ridiculous? It didn't seem ridiculous in the dream. My answer to her was the end. I said, "I can't go out there. I'm on chemotherapy for God's sake. It's cold!"

My Very First, Last Time

2009-01-20T06:48:00.000-08:00

Yesterday I popped my last prednisone pills for the first time. There are at least three more, three week cycles of the same regimen, with two pills each day for five days at the beginning of each term. I'm sure that the 'P' is a support for the other drugs that work pervasively to weaken my body. The 'P' peps me up, the others bring me down. Today I'll find out. Maybe today my eyes won't feel like they're braced open with sticks and the nervous, pacing energy will pass. I hope the aching joints, especially my jaw, that cracks each time I eat or drink, are 'P' problems. Maybe the light sensitivity that's been making reading painful will disappear for couple of weeks.

I see in my mind's eye the 'C drug' and 'V drug' coursing through my bloodstream flanking all my cells and eliminating indiscriminately. "Let them all stand down" the drugs are calling. "We will prevail." It's a little like a reverse of Barack's speech on race, "neither black nor white, Hispanic or non-Hispanic,...", none are exempt in this struggle. Which reminds me. This is a historic day. The first black president is inaugurated. Years from now I'll be asked, "Where were you when Barack was inaugurated?" Like "Where were you on 9/11?" or "What were you doing when Kennedy was assacinated?" We love to make associations to these great moments of history. I'll be saying, "I just finished my very first last day on prednisone, and what a day it was."

I've been told my body is entering a week of low resistance. During these next seven days or so the platelets and fighters in my blood steam will have been douched clean by the drugs. Infection is my worst enemy. I'm monitoring my temperature. I'm washing my hands. I'm avoiding crowded places. I'm trying to spend time outside. Joan's sleeping downstairs with her nasty cold. I must admit, this whole scenario is like a suspense novel. Will I get a bug? What symptoms will I feel? Is that ache from the drugs or am I getting sick? Yikes! I sense some paranoia happening here. Maybe this isn't fun anymore!

It's recycle day here. That's what I will use to mark the day. Take out the bins and let Obama fill me with inspiration.

Living With the 'P Drug'

2009-01-18T07:15:00.000-08:00

The only drug I've been entrusted to administer myself is prednisone, a so-called corticosteroid and not the famous anabolic steroid used by the body builders. Mine may not bulk me up, but for such a tiny pill, smaller than a 'Smartie', it does do some impressive things. I gather it is used to treat allergies, and for the record, in the three days since I've swilled my pills my sinuses have been clearer than mountain dew.

It's the energy boost I'm feeling most. How does downing of a litre of strong coffee at a single sitting feel? I'm alluding to a major caffeine hit. Much nervous energy, a few twitches, eyelids stuck open although you wish they would shut. Yesterday I brushed ferns in my garden for more than an hour, played tennis on the Wii into a stratosphere zone of professional level, practised Yoga poses several times in front of the news channels and tried many times to nap, a non-activity I mastered many years ago. Naps wouldn't come and away I would go again, dizzy with action. I have two more days of this. Perhaps today I should channel my energy more creatively. I worry that I've just scratched the surface. There may be other symptoms to come. This morning I've have pains in my jaw when I eat, as if the jaw joints are sticking. What will tomorrow bring?

The first day I had unrelenting hiccups that gassed up deep down in my abdomen and percolated upwards until painfully erupting in my chest. Conservatively, I can honestly say, I haven't had hiccups for five or ten years. It was not fun! They came back five times, once when I was standing at the prescription counter in a pharmacy. I had to leave while I waited for the prescription because I couldn't control the noise. I paced up and down the sidewalk, holding in my breath, gulping air, trying to burp, ugh! It was like an exorcism. Some evil, bubbling spirit welling up inside me. Seems that I won this small battle, the problem has disappeared. As Joan said, "If that's all the suffering you have, stop your whining!"

Let None Escape Alive

2009-01-16T07:30:00.000-08:00

I'm on steroids! Here's my chance to channel unbounded energy into bulking up my aging body. Yes, two of the drugs I'm pumping, namely drug V (virgin) and drug P (proposed) are steroids.
"You might find yourself washing walls in the middle of the night." said the needle-wheeling nurse.
"Oh great, I'll leave him out the bucket and sponge." said Joan.
Fortunately it didn't work out quite as they hoped but I did have an energy burst in the afternoon which produced two, perfectly vacuumed vehicles.

Our visit to the clinic was like visiting a vacation lodge. Volunteers flocked around offering drinks and cookies. The chairs were sink-in comfortable. Timing was dead on, we were out by noon with our lunch wraps uneaten. Food wasn't foremost on my mind since I was full of the 'other stuff'. All the natterings about side effects were running in my head. As the first pack of liquid dripped down my intravenous tube I expected some immediate reactions, feelings... something, but nothing happened.
"This is only about 5 minutes and the next one about 30," the nurse assured me,
"And we rarely have people with a problem."
Before we left she had given us another in-service on how to log the dosages over the next few days, and how to cope with possible side effects yet to come.
"This on causes nausea so you'll need one of these twice a day but the anti-nausea might cause constipation so you'll want of pick up some of these. You might want to see your family physician for some sleeping pills, this one might keep you awake."
And so it went, one antidote after another, a list, a diary record and more pill packs than I've ever imagined. Get in there drugs and kill off the bad guys.

We learned more important details of the process from our excellent nurse. She was worth all the other presenters together. Number one concern is infection, which can be measured very accurately with a digital thermometer. We purchased this little marvel yesterday during our raid on the pharmacy. No more squinting at a microscopic line of polluting mercury. Apparently I'm probably not going to experience normal 'infectious' symptoms, hence the temperature reading of 38º is key. Twice a day I need to check the thermometer.
My body is now on a three week cycle. I tried to compare it to the female menses but Joan shot me down pretty quick.
"It's not the same at all. Next you'll be comparing to childbirth pain again. Drop it!"
Whatever, I'm most susceptible to infection in the middle days of my three week cycle. The first week will be hardest, with unpleasant effects doling out their nasties. The last week will be best, when my blood will be going into recovery, hopefully with fewer of the bad guys around to bother me. As for now, day two, all is rosy. I haven't been sick or bothered by anything other than the revulsion of having to pop so many pills. Life goes on. I'm ready for a good day.

The Battle is Joined

2009-01-15T06:30:00.000-08:00

Drugs! There was a time when the names were simple and ended with 'ate' or 'ium' like calcium carbonate or potassium promanganate. Not any more. Now among the hundreds of thousands to choose from, the names have become long beyond counting and mostly unpronounceable except to a few elite. For the rest of us there's a common name like 'Tylenol' or as in the case of cancer therapy an acronym like CVPR. Don't try to learn the real chemical names. Just memorize the acronym. Think up a catchy phrase like Compromised Virgins Propose Rape and simply refer to them in knowledgeable circles as the 'C drug', the 'V drug' etc.
This morning I begin my CVPR or at least, most of it. I'm won't get my hit of drug R until the next cycle three weeks hence but the nasty three, CVP, will be a challenge. I'll be there in one of the plush recliners at 10:30, tube in arm, sucking up my fix of C and V. Later I'll begin five days of popping capsules of drug P. There's others too. Several more unintelligible names that keep the team of CVPR in line. No puking please! Keep your bowels working! Need some sleep, take me! My life and body will be handed over to the drugs.
It was a 'no brainer' as they say, to make the decision for CHEMO. Dr. Y... clearly encouraged us on this route. My first question to him at yesterday's meeting was "Does my NHL have a name, I mean is it a specific type?" Research of my condition had always brought me up short when I couldn't produce a definite 'type'. Had I just not thought to ask before? His answer was uplifting. "We can't get a specific type without sample from your lymph nodes and of course you don't have swelling or symptoms yet." Mine, you see, is 'indolent' or lazy cancer that can take years to show it's nasty side. "What do the blood count numbers say?" was my next question. The numbers don't lie I thought. I'd begun two months back with white cell counts around 62, when normal should be half that. A month later I was up to 75, now I'd jumped to 87. Dr. Y... asked the usual questions: How is your appetite? Have you lost any weight? Any night sweats? I had nothing unusual to report except I knew my weight had gone up 10 pounds since this adventure began. We could wait, that was obvious. There would be a danger of getting used to abnormal symptoms and learning to live with them. I knew I had serious fatigue issues. Could I live with those for a few months? Not a pleasant thought since they had worsened in the last couple of weeks. "I'll do it!" I replied without hesitation when the question of CHEMO was broached. Nip it in the bud, hit 'em when they're down, squash it like a bug, level it... let's do battle and obliterate this sucker!
Now it's all about coping with the reality. CVPR here I come.
A nurse came to us in our cozy meeting room and made yet another presentation on 'coping with CHEMO', the not so condensed version. She seemed like a steam roller ignoring the potholes. "You'll begin tomorrow, I hope you've done your homework." We quickly learned not to ask a question that would start her on another tirade. "It's all in the sheets here. You'll need to do some reading. Just remember, if there's a fever over 38 call the nurse." It was a jolt for both of us. Our 'sheets' were at home. Starting tomorrow! Yikes! Give a guy some space! But as the idea settled, I was happy to get on with the action. Life will be good again. Just give me four months to suffer. Look on the upside, it'll be around Easter, I can model a new bonnet on my naked scalp!

Too close for comfort

2009-01-10T09:11:00.000-08:00

Yesterday Joan and I attended an introduction to CHEMOTHERAPY session at the Cancer Clinic with ten other weary, wary people. Most were couples, which meant six or more of us had contracted the disease. All our cancers were likely different but all either anticipated receiving treatment in the near future or had already begun. We were a serious looking crew. Our seats were near the back where I could easily gaze upon the others. "Which of them has the cancer?" was my usual thought. "He's making the notes, it's probably him." "Many of these women could be breast cancer." In the end I thought, "I'll soon know many of these folks because I'll be spending many hours lingering about the building."
I took in my large 'Non-Hodgkins' record book, given to me several weeks earlier but not used until now. It has pages for note making and calendars to log treatments plus most every detail that was presented at the info session. I was able to 'follow along' as the nurse presented. There wasn't much that was new. Mostly re-enforcement of things we'd heard up to this time. I spent several minutes trying to discover the 'type' of lymphoma I likely have. It will be my first question to the doctor on Wednesday.
The room was especially warm. I had to peal off my sweater part way through. Joan roasted quietly in a heavy knit. After 90 minutes of glowing, we were very relieved to exit into the cold outside air. Going in had been the complete reverse, relief to enter the warmth. Why do they keep these buildings so warm? Maybe it's relaxing? After the session we chose not to follow a tour of the facility. We were both uncomfortable and I'm sure I'll get to know the place intimately without taking a formal tour. There are so many volunteers around the place! Giving tours is a pleasant way to socialize with patients and each other.
The clinic is a classy, secure place built on a multitude of 'out patient' operations. They will 'manage' me as they manage hundreds of others. Everyone will get just the right amount of drug or radiation in a spacious, relaxed atmosphere. It's a world built around a disease. I'm thankful it's there for me to borrow.
I'm constantly examining myself looking for symptoms. Not much there to find. I have afternoon fatigue and fatigue when I undertake anything physically strenuous. I notice a problem when I finish a rigorous session in the gym or climb a hill. Swimming doesn't seem to be an issue until I climb out of the pool, even though I continue to paddle my way through 24 laps as I've done for years. There must be a dramatic change inside the blood vessels when a body goes vertical from horizontal. It's magnified many times for me and settles in my head like a great weight of lethargy.
It's an unfortunate waiting game for all of us. I often catch myself speculating whether people who look at me are musing... 'Oh he has cancer, is he dying?" I've done it myself, especially in the gym where I often see folks with health problems. "She has cancer. How sad! Is there pain?" "How long has he been living with that problem?" Always there's a little pity. The folks who have survived some issue are entirely supportive. "It's temporary. You'll get past this. Keep up the fight." So time moves on. Next week we'll take another step and see what life brings.

What are the symptoms?

2008-12-10T06:38:00.000-08:00

I've read the list many times over. Swelling, night sweats, fatigue, weight loss, stomach pains. I haven't been able to make any of them fit. Sometimes I've doubted the diagnosis. How can I be ill if I'm not really ill?

Two days ago I went on a tough scramble up some very steep cliffs. I'd been light-headed and a bit dizzy all morning but expected it to pass once I was outside and moving. When my heart began to pound my head responded with worse. Several times I worried I might not be able to go on. The others were having their own problems so I wasn't lagging behind. At one wheezing, puffing break W said "Sometimes I'm sure I can't blame my aches on anything but old age. Maybe I'm aching from injury, maybe I'm just older. One thing's sure. It takes a hell of a lot longer to heal!" Was it simply old age? The message my head was sending, was like nothing I'd ever felt before. It was frightening. My blood was screaming. This was fatigue. My white blood cells were crapping on me and it was going to take a lot more than time to make them stop.

The Shit Hits the Fan

2008-12-07T07:31:00.000-08:00

Four days have passed since my visit to the Cancer Clinic for my first monthy assessment. I'm still a bit shell-shocked by a simple perusal of blood counts turning ugly. Suddenly I'm no longer a casual "wait and see". Now it's probably CHEMO next month. My how the tide has turned!
My white cell count jumped about 15 points to around 75 which I suppose taken as 25%, is quite large over 30 days. As Dr. Yee said, "You could have a miracle and not need the CHEMO but I wouldn't make any plans." If my count makes a similar leap during the next 45 days (it will be Jan 14 when I see him next) I should expect to add another 27 points and probably break 100. The math is not encouraging.
My life had immediately changed. I had to cancel my cruising plans with Paul. I had to bail out of our Mexico trip in April. If the CHEMO began in January, my hair might have grown back to fuzz by May. June would likely be my first 'normal' month. With luck, our trailering plans for the summer could remain intact.
"Hey it's CHEMOman!" Graham greeted me as I entered the gym. He had been with me the day I got the nasty news. "You'll be taking treatment over Easter, it'll give you a chance to wear a very classy hat." I laughed. Trust Graham to make a sour situation light and funny. His life has been fraught with many downs that gave him practice.

D-Day Triumph!

2008-10-30T07:18:00.000-07:00

Our appointment with Dr. Y at the cancer clinic will be today at 11:30 am. Seems an awkward time to me. I'd rather be looking for food about then. I'm determined to keep my nerves in check so I decide to take my tools and go to P's place to solder in some wires for his door buzzer. Even with my hands busy I still feel extremely flighty. My mind doesn't want to dwell on positive thoughts. The word "aggressive" keeps pushing its way to the front. I'm home in plenty of time but J has gone out which leaves me in limbo. I decide to play the piano which I haven't done in months. Why do I feel like playing the piano? Is my subconscious worried I may never get to do it again? Scary thoughts!

We leave for the clinic with plenty of time to spare. I ask Joan to drive which I normally never do. I'm asking myself why, but I know the answer. I'm frightened and I expect to be shaken with grief and incapacitated after I get the news. If she drives us there, she'll be set up for the drive back. Screwy logic! I'm not in my regular space here. I might as well be back in Sevastopol, starving and stressed.

We wait and inordinate amount of time in the waiting area after filling out a crazy form that has little relevance. How much pain do you have? Where do you have pain? How many days of the week is your condition affecting your daily routine? Is your appetite gone? Over and over I read these non-applicable statements. I'm fine. Get me away from here and I'll be fine.

A nurse leads us into an examining room and rolls in a blood pressure gizmo and thermometer. I'm surprised. I didn't expect to be examined today. I want my final blood results and info from the bone marrow exam. "It's standard to take blood pressure and temperature," she explains. The thermometer is soon under my tongue and my arm is wrapped with the inflatable pressure gage. Joan begins a story about our time in Sevastopol and the nurse is rooted to her spot with her mouth hanging open. "My God! That's unbelievable!" I feel my blood pressure rising. The gage shows a number slightly above normal. After she leaves Joan, who has considerable experience monitoring blood pressure, explains the correct procedure. It doesn't include dwelling on stressful items in your life. "You should have been lying down thinking peaceful thoughts."

Dr. Yee arrives with my sheaf of records. I'm immediately trying to read his face for signs of sadness or sympathy. "He does this many times a week," I think. Why should his face register anything unusual. We shake hands and he meets Joan. He sits casually on the stool in front of us. I'm busting to hear the news and utter something inane like, "So what's my fate?"

"Well good news," he begins. "Your cells are not the aggressive ones I first predicted." My emotions jump and dance with relief. "You have lymphoma but it's the slower less aggressive type. We probably won't treat it for awhile until some symptoms appear. The symptoms are what we watch for rather than the blood count."

The remainder of our session is elaborating on various treatments for non-Hodgkins lymphoma and setting up appointments for a monthly blood test. I discover my white cell count hovers around 60 while normal is 20. I also discover patients reach counts as high as 200 but still don't have symptoms. When I have some reliable symptoms then there'll be some chemo waiting in the wings. The treatment, when and if it comes, will be the ugly part, with pain, nausea and total discomfort. Dr. Y paints a nasty picture of stem cell transplants, which he says, at my age, I couldn't endure. The chemo for such a treatment is debilitating and often fatal. Yikes! We won't go there. Radiation is also not suited to my problem. When and if I'm treated it will be some type of chemo. It could be years down the line.

I'm left waiting for any of the following to emerge: a swelling of the affected lymph node (s), an unexplained fever, night sweats, tiredness, weight loss, itching, skin reddening, and chest pain. On the way to the casino for our celebration, with me driving, I'm conscious of thinking about my lymph nodes. I'll have to repress the urge to examine my neck for swelling. At least now I'll have a good excuse for an afternoon nap.

24

2008-10-28T13:36:00.000-07:00

Today I had a CTscan. I went to the Saanich Peninsula Hospital for the first time. Seems to be a major place for all kinds of specialty tests. A large waiting area was surrounded by many little service windows and signs for CT Scan, Fluoroscopy, Bone Densitometry, and Ultrasound. I was registered and waiting my turn in less than 10 minutes.

Two large glasses of something were delivered to me in the waiting room. "Drink these in the next 5 minutes or so and I'll be back to get you in about an hour," he said. It was a struggle. Too much liquid! I was thinking 'bathroom'.

Almost on the timer, the technician was back after 45 minutes. Apparently whatever chemical I'd ingested was nicely settled in my stomach. "How was the drink?" he asked as he led me down the hall.

"Big!" I was glad I'd had a decent pee moments before. "What's in the drink?"

"Something to make your organs show better in the pictures." I was shown a small change room and given a hospital gown. "Go down there and find me when you're ready," he said pointing.

He greeted me at the door of the CT room with another very large glass of water. "This one is to distend your stomach." All I could think about was my rapidly filling bladder. I was prompted to climb aboard a wheeled table with my feet pointing toward the huge CT machine. I was going to be passed through what appeared to be an enormous, whirring, doughnut of x-rays. Everything was automated. We had a practice run. A voice guided me to breathe in, hold your breath, breathe normally. "I'm going to put in an IV before we do the final run." I was asked all the usual, 'Are you diabetic? Any allergies? Using blood thinners?' The IV was in place and connected to a very complicated looking appendage of the main machine. "When the IV starts, you're going to feel the urge to urinate but you won't. It'll pass." Considering the quantity of liquid I'd consumed in the past hour or so, I wasn't too confident about the 'urge' passing. "It takes 24 seconds. Take a few deep breaths so you can hold your breath for the whole time and don't begin breathing quickly afterwards. Just stay still and settled. The best pictures will be if you're perfectly still."

I thought, "24 seconds! That's about how long until I have to pee." I was racing to dress and find the washroom and pleased that I knew where it was, but shocked when I arrived. A sign had been placed across the door, 'Temporarily Out of Order' I rushed to the front desk and asked for another. Down to Emergency, a long corridor away. "Aptly named," I thought.

Searching with a hollow needle

2008-10-23T07:27:00.000-07:00

I felt relieved to finally doing something instead of waiting. I was off to do a little more blood-letting and have my bone marrow biopsy. I carried my current novel and my cell phone in case I got lost in the labyrinth of hospital halls. I was upbeat and ready to defeat all comers.

I allowed about a half an hour for the blood clinic and was pleased to discover no one else was waiting. I had to check the a wall sign to confirm it was open since the serving window was closed and dark. I could hear some voices through the lab door so I took a seat and began my wait. "Maybe they were just getting set up," I thought. I'd read a few pages before they ushered me in. This was a major blood collection. Many tubes were filled and duly labeled. Some were tests for hepatitis. The others were lost to me until the nurse remarked that I was right to have the blood test first because one test was critical for the bone marrow work. Later I pieced together that she didn't know about my earlier creatine test.

On the way to the fifth floor biopsy lab, I shared a huge service elevator with some joking maintenance men struggling with a step ladder. I thought, "Would they be so happy go lucky if they knew my problem? Am I going to start sizing everyone up this way? Do I want people to show sympathy? Does everyone with a handicap feel like I'm feeling now?" They unloaded noisily at the fourth floor and quiet reigned as the doors opened at the fifth. A receptionist checked me in and directed me to sit in the vacant waiting area.
"You're our first patient today," she said, by way of explaining why no one else was around.
I read the wall posters and watched a few people in lab coats pass by before finally sitting down to read the novel I'd brought along. "Waiting again," I thought. "This has become my life." Several slow-moving minutes passed before a nurse came by to collect me. We entered a small single-bed room that looked like luxury on steroids after my Ukrainian experience. I couldn't help but make the comparison. Everything looked shiny, clean and new. Best of all, the nurse spoke English.
"Don't worry about putting your shoes up on the bed. We change all the sheets anyway. You'll need your jacket off but that's all. Just relax."
I settled in for another wait. This time lying comfortably on the bed with my head propped and feet up. "This is first class," I thought. The nurse used a wall phone in the room to call Dr. B, the resident haemotolgist who would do the biopsy. The nurse left, shut the door and several more minutes passed. I was glad to have my novel and even more pleased that the point in the story was very engaging.
When the nurse came back she was followed very quickly by the doctor who was accompanied by a second doctor. "Do you mind if Dr. L watches the procedure. She's my student." Of course I didn't mind. "The more the merrier," I said.
The doctor was perhaps 30, a collegue of Dr. Y. They had trained together in Toronto. She was very careful to explain all that she was doing for the benefit of the student which pleased me. She had me turn on my side and raise my shirt and lower my belt slightly.

"There are two ways to determine the point to enter. I use both of them. This method is difficult because my hands aren't usually large enough but it serves as a check."

I could feel her prodding with thumbs and fingers just above my hip bone. She muttered some Latin terms for the student's benefit which I assumed were a flattering description of my anatomy.

"Why do you use this particular spot?" I asked.

"As we age only three spots store liquid marrow. This one is the easiest to access. The other spots are the sternum and the ribs but they mean working around vital organs. This might feel cold, I'm going to mark the spot with some reddish colour"

"Go for it. Indelible felt marker no doubt. Should make me stand out in the change room. I've got another question for you. Do you mind?" Something cool and moist had just been applied to my region of interest. "What if you have an obese person? How can you deal with that?" I was thinking of the needle that had yet to pass into my flesh.

"Aha! A question I'd hope for from a student. We have some longer needles but sometimes even they aren't adequate. Then we go in the chest which is risky because like I said, it's over vital organs. This might hurt a little. I'm going to freeze the area.

I felt the bite of the needle and then its movement in my flesh as she backed it out, squirting as it retracted. A couple of more plunges followed. "Numb bum! That's me!" I said. I heard a few snickers behind. "Dumb bum!" more like it I thought. Very few moments passed as my region passed into oblivion.

"I'm almost ready with this."

I glanced over my shoulder. The doctor was holding a prodigious needle and syringe above me. I could tell the needle was hollow because of the glinting, light behind.

"This will hurt a little. The bone itself has nerves that don't freeze. You'll feel it. OK, you ready?

"Go for it." I felt nothing at first but the instant she struck bone I was tuned to pain. It was much like a dentist's drill working too deep. The skeleton vibrates. I felt the probing needle pushing hard against my hip bone. And then blissfully, it was over.

"Done!" she said.

"How do you know how deep to go?" I said. "When I drill a hole with my electric drill I sometimes put a small piece of masking tape around the bit to mark the depth. Don't think that would work here!"

More tittering from the three behind. "No, I don't think so. I do it by feel. I can feel the first touch of bone then I push harder and I can feel the needle break through into the soft, inner tissue. Here's your marrow, " she said. I glance back at the small tube which looked to contain something not unlike blood. "I also have a sample of hard bone that's seems to be stuck in the needle." She was squeezing forcefully on the plunger of the syringe. Suddenly there was movement. "There." she said. I was shown a tiny piece of whitish material. "This will be crushed, mixed and turned into a slide."

About ten minutes later I was out the door, feeling a little bruised in the butt, but otherwise fine. These folks really know what there're doing, I thought. Thank goodness I live in Canada.

Mind Games

2008-10-22T11:50:00.000-07:00

Once again I was waiting. Now I knew, without a doubt, that my blood was behaving erratically and I was battling leukemia in one form or another. An additional appointment, not yet made, for a CAT SCAN was also looming. By Thursday of next week I would be meeting Dr. Y at the cancer clinic, all possible data on hand, ready to form the battle plan. The next few days, whenever I sat at the computer, I found myself searching for testimonials from other cancer victims. It was almost involuntary. What would my immediate future hold? Was I going to be purged with chemicals, burned with radiation or maybe reborn with a bone marrow transplant? What the hell was 'bone marrow transplant' anyway? Another thing to look up. Where before, I'd thought I was part of the group 'chronic', now I wasn't so sure. The doctor's use of the word "aggressive" didn't rest well with me. Each, waiting day I'm stuck with my dizzy head and sudden overwhelming feeling of fatigue. Dr. Y said it probably wasn't related but I can't stop the worry. I've had to tell friends and family members. I've become an invalid. I'm wondering what people are whispering. "He's the guy with leukemia. Poor b--!" This is paranoia I'm describing.

Sometimes when I'm lying in bed, secure, warm and comfortable, I think, "What is happening here? Get over this! If doctors hadn't told you, you were sick, you wouldn't be. You'd expect to feel weary from the appendicitis and all the horror of Sevastopol." Then I'm back to the reality of it. My worst is yet to come.

Joan took a call from Dr. Y while I was out. I was to go for an unscheduled blood test at our local clinic. What was this about? Had something new been discovered or was this just correcting an oversight? I got me hopes up a little. Maybe there was some indication in an earlier test that other reasons were responsible for my elevated white cells. Maybe this was a check! As the technician plunged the needle into my arm I casually asked,"What's this blood for?"
"Creatine levels," she replied without slowing her movements. Only one vial was filled.
"What's that for?"
"I don't know. Sorry, we just send it along to the lab."
Later, after a little research, I figured out this test was essential before the bone marrow biopsy. Nothing had changed. I was still under attack by this silent invader.

Meeting my blood detective.

2008-10-21T20:53:00.000-07:00

Time dragged until Tuesday, October 21st, my appointment with Dr. Y, the blood man. Haemotology! I grappled with the spelling of the word. This man is an expert on all the variables involved with blood. A week earlier, on his specific request, I'd offered up yet another vial of my compromised red stuff. The quantity that has passed through my right arm during the past month must measure in litres now. A few unsavory, street people would be impressed by my freckled, punctures marks. Today, all this blood would reveal its story.
Dr. Y was quick to see me. I thought, "Wow! He's so young. That should make him very current." He had me put on a hospital gown for his simple physical exam and I silently applauded. This was so unlike the experience I'd had in the Ukraine. We talked about his travels in Ethiopia and other pleasantries, then we were back in his office. The blood test results were all together in front of him. He flipped back and forth between a couple of records as he talked. "You have an aggressive form of leukemia which we have to treat. Fortunately it's treatable."
I was in shock. How could I feel so fine and yet have this disease? Dr. Y went on to explain the next steps I must undergo. More blood tests! A bone marrow extraction! It all sounded so fantastic. He went over the time table a second time. I think he knew I might not be registering details too clearly. I repeated the schedule back to him as if to rehearse. In two days, on Thursday morning, I would check in at the lab at the hospital for the blood tests, then follow up with the bone marrow thing that same morning. There was a sense of urgency about all this!

Leukemia Enlightenment

2008-10-16T08:00:00.000-07:00

Over the next days I did a few hours of research on leukemia and its many variations. I hadn't been told anything for certain but Dr. E, my GP, had suggested that the high, white, cell count smouldering in my body probably signified 'chronic lymphocytic leukemia'. With a name like that how could I not be curious? My body was growing dysfunctional white blood cells that might eventually crowd out some of the healthy ones. Was the dizziness and fatigue that crept up on me each day a symptom from my battered blood? I worried that it might be. But it could also be lack of sleep or recovery from invasive surgery in a foreign country! The old 60s TV slogan, 'Tired Blood? Take Geritol!'came to mind. Tired blood? No doubt about that. I ran down the list of symptoms atributable to leukemia. Fever? Nope, I don't have that. Weight loss? Well, yes, but who wouldn't be down a few pounds after starving for several days in a run-down hospital? Loss of appetite? No way! I'd eaten a second helping of Thanksgiving turkey and waddled away massaging my stomach. Lethargy and fatigue, especially during exercise? Possibly, but I'd been swimming, working out and hiking during the so called recovery period after surgery. Night sweats? Nope, not at all. Most of these symptoms could have been left over from a cold or flu especially in a 65 year old. I was getting nowhere with the speculation. I felt fine except for the dizziness. "Be patient. Wait!" I told myself.

Just a hint of what's to come

2008-10-07T15:45:00.000-07:00

I'd been advised by the doctors in Sevastopol to visit a haemotogist when I returned to Canada. Doctor Edora, my GP, sent me along for blood tests and called me back in for the results. It wasn't a simple 'make an appointment when you leave for about a week hence and we'll go over the results'. We expected that, and I had the appointment booked, but the day following my blood-letting I got a call from Edora's nurse.
"Dr. Edora would like to see you as soon as possible. Can you come in later today?"

And so I had my first clue that something was wrong. My mind ran over the Russian chatterings offered by the woman who had done the first Ultrasound at the Sevastopol hospital. Julia, our translator was with me.
"She says you have the swollen liver of a drinker."
"Well I did have a couple of extra drinks last night."
"No not like that. Like someone who has a drinking life style."
This couldn't be me I thought. But now the words were back to haunt me.
"You have a very high white blood count," Doctor Edora told me. I was in his examining room feeling hopelessly jet-lagged and suffering from a head cold that I'd brought back from Europe. I didn't want to hear any bad news. "This is a little out of my league, I'm going to send you to a blood specialist."

Everything began to move quickly. An appointment would be made for me to see a haemotologist. My cold dried up and I began to recover some normal sleeping patterns but most days a dizziness dogged me and I felt exhausted after doing a short spurt of exercise. I resumed most normal activity, going to the gym, swimming, hiking and going for lunch, getting the garden ready for winter. Most bursts of activity were followed by hitting the sofa until my head cleared. I began to worry that the dizzy feeling was more than simply lack of sleep or complaining sinuses. I still hadn't heard from the specialist but word came down the pipe that I needed another 'specialty' blood test that could only be done at VIHA labs. I convinced myself that this test would provide confirmation of my true condition and I wouldn't need the bone marrow test Dr. Edora had hinted about. Probably my elevated cell count was from all the stress, the cold, the lack of sleep and of course the recovery from the appendectomy. The itchy scar glared at me each time I showered. It was a constant reminder of my worst nightmare but now I seemed to be entering yet another.

I phoned the specialist myself because waiting was very wearing. A patient not knowing their fate is a patient that feels abandoned and thinks the worst. I discovered my appointment had been booked for the following week. I just hadn't been notified yet. More waiting. More speculation. More preying daydreams.