Unexplored Territory

Yesterday I went down to the Juravinski Cancer Centre for the first check-up since the end of my radiation treatments. My radiation oncologist Dr. Wright and his resident poked, prodded, peered and perused every corner of my throat, inside and out. The tissues are healing nicely, slightly ahead of the average curve apparently, there’s no swelling anywhere there shouldn’t be, and everything is returning to a colour vaguely resembling the colour it was before it all began. The conclusion: he is willing to go out on the proverbial limb and declare me to be 100% cancer free – with 95% certainty.  The 5% is reserved until after I have a high-contrast CT scan performed in the next few weeks in case it reveals something completely unexpected. Failing that though, I’m done. To quote the good doctor, “Just keep doing what you’re doing and we’ll see you in six weeks”. In two weeks we’ll see if my surgeon is willing to make the same bold declaration.

If he does, it’s a declaration that has me facing some previously unexplored territory – the future.

Let me explain…

I was 14 in 1967 when my Dad decided to explore the family genealogy as part of the whole ‘Centennial Year’ thing. What we discovered was that the males in the Gray family are pretty short-lived. On average we tend to kick off in the mid-Fifties, with the overall average being a ripe old 56. In the dozen or so generations he was able to track down nobody survived past the age of 60. My father did not buck the trend, passing away from colon cancer at that very same Gray family average.

So over the next few years I thought about that from time to time and by the time I reached my twenties I had pretty much resigned myself to the idea that 55-60 years was the best I could hope for. Planning for retirement was pretty much set aside and I started living life with little more than your basic 5-year plan.

But now, it looks like I have to re-jig my thinking. It would seem that there is a new paradigm on the horizon; for the first time in my life I have to seriously consider the prospect of growing old!

I know, to you it sounds strange, but the reality is that I truly had fully resigned myself to dying of cancer sometime in my Fifties. In fact, in some respects I was actually looking forward to it; you know, seeing Jesus and all. When Dr. Wellman revealed that cancer had been found in my cyst back in November there was no shock, no dismay, no fear, because I had been expecting it all along. The diagnosis arrived exactly on schedule just as it did with my father. There were no surprises at all.

However, one thing has changed – medical science. Unlike all the preceding generations, when the inevitable struck me, no one was saying, “This is it I’m afraid. You have x months to live.”  No, instead, there was a very confident team of specialists saying, “Here’s how we’re going to get you out of this.” They laid out a very convincing plan of action and all that they planned has gone exactly as planned, maybe even a little bit better.

There was another difference as well. While my family has always been of the church going variety, faith in God to change the future was never a part of the religious dynamic. Faith was something that carried you through the hard times and gave you the strength to face certain doom with the traditional British stiff upper lip. Disease, misfortune and death were not things to pray your way out of, they were part of God’s mysterious ways and no one seriously expected anything to change.

I however, have been blessed to be part of a praying and more importantly believing faith community. Dozens of people have contacted me to tell me they are praying for my successful recovery; there have been dinners brought to the door, rides to treatment offered and a variety of other expressions of love and support that have, quite frankly, left Roberta and I feeling slightly over-whelmed. And it would seem that all that prayerful support have borne fruit. The cancer has come and gone and I’m still here. Praise God!

Now, before I get a minor flood of emails taking exception to my crediting God in this I will answer your objection right now. I have absolutely no idea why everyone who is prayed for as I was doesn’t get healed. I have no doctorate in theology, no inside track on the details of God’s plans for the Universe, and no pretensions for being anything other than the simple believer that I am. However, I am a believer, and I believe that the prayers of my friends at Kortright and elsewhere have had just as much a bearing on this outcome as the ministrations of the doctors, nurses and technicians at the Juravinski and St. Joseph’s in Hamilton.

And I am immensely grateful to each and every one of those who prayed, cooked, drove, hugged, filled in for, and gave of their time and resources to support Roberta and I over the last 5 months.  You people are amazing!  God bless each and every one of you!

However, that still leaves me facing a future I never thought I’d face.  And though the prospect is actually a little scary, I’m looking forward to it. I now have to actually ponder what I might do with my twilight years. Any suggestions?

Till next time… Shalom.

Once More with Feeling

Today I am headed down to the Juravinski Cancer Clinic in Hamilton for the LAST of my 35 radiation treatments.

In recognition of this momentous event, I present to you dear Reader a poem I have been working on for ahile now. I feel it only right to recognize the person responsible for my experience of the last 7 weeks.

Of course this will not be my last trip to Juravinski. I’ll be back for a check up in 4-5 weeks, and then a CT scan 4-5 weeks after that. But, as they say, the worst is over. Now I can start to heal.

Until next time, enjoy the poem… or not.

Shalom.

On Madame Marie Curie (by Dennis Gray)

Madame Marie Curie
It’s all her fault you know,
The pain I’m feeling now.
The constant scratching in my throat,
The taste buds that no longer work,
Spit glands producing at under 10%,
Energy levels of a man twice my age,
Leathery skin that flakes so easily.
It’s all part of her legacy.

She started it you know, she and her radium, polonium.
It didn’t take long for the crackpots to follow;
Radium water, The Cosmos Bag, Radithur
Fiesta Ware, eat your meals from uranium dishes
That will cure your ills.
All because of her and those Nobel prizes.
Cures worse than the disease.

But “time marches on” as the newsreels say
And soon the quackery falls by the wayside,
And Marie’s science remains still.
Isotopes collide, neoplasms fall,
30, 40, 60 Gy (gray) and counting,
The tumours can only take so much.
The Cancer succumbs to the onslaught.
Pain is temporary, moisture will return,
The colours in the CT scan will realign,
The “South” will rise again,
And there is new hope for tomorrow.

Yes, it’s her fault alright!
Marie Curie and her little glowing saucers.

Merci Madame. Merci.


Addendum: For those of you who may not know; Marie Curie and her husband were the first to experiment with radium and other radioactive materials (a term she coined).  Among those experiments was the use of radio isotopes to destroy neoplasms, that is, cancers.  She won Nobel prizes in both physics and chemistry for her ground breaking work.

Image courtesy Wikipedia Commons.

Marie Curie - wkipedia commons

Marie Skłodowska–Curie

What’s Up Doc?

Monday was the first of 5 Review Clinic sessions I’ll have with Dr. James Wright, my radiation oncologist. Every Monday for the next 5 weeks (the last 5 weeks of my treatment cycle) I’ll meet with the good doctor and one of the nurses in the Review Clinic to take a look at how my regimen is progressing.

We started off yesterday with a look the CT pictures they took as part of the planing session. They are a series of cross sections of my head inside the mask used in the linear accelerator. Imposed on this in a number of colours, are bands that define which areas of my head will receive what levels of radiation exposure.

The hot zone, not surprisingly, is the location of my former right tonsil, where they found the tumour. They did cut the tumour out when they took my tonsil, but there are an unknown number of microscopic “roots” that are left behind and need to be destroyed by the radiation. This area of my anatomy is a bright yellow colour in all the various scans.

In the red and blue zones are the various lymph nodes located in and around my throat; down each side of the neck, along the upper edge of the clavicle. Since the cyst that disclosed the presence of P16 was in a lymph node, radiating the lymph system makes sense and gets the next highest does based on distance from “ground zero.”

There’s a green line (I think – I have colour blindness issues) that delineates the outer most reach of the treatment. No radiation above the level of my nostrils. Don’t want to irradiate the grey cells at this point. But then in my case, every cell is a Gray cell! lol… (All right. I’ll be good.)

The clavicle forms the lower border. No radiation below that level. Everything in the middle will receive one of about 11 varying degrees of exposure that were detailed on the CT scans.  I was impressed that they could discern all the exposure levels in such detail. Gives you a real feeling that they truly knew what they were doing. That is, until Dr. James Robert Wright made this encouraging, and inspirational statement.

“Yeah…    So…  there it is.  We’ll keep fartin’ around like this for the next five weeks and when it’s all over hopefully we’ll get the results we were looking for.”

Excuse me! You describe this supposedly high-tech, targeted procedure on which I am betting my continued future existence as “farting around” ?? Nice choice of vernacular Doc!

Flatulence references aside however, the good doctor is mostly correct in his assessment. The fact remains that as far as we have come and as much as survival rates have increased, cancer therapy still remains, to varying degrees, something of a crap shoot.

They can take a guy like me, mid-fifties, slightly over-weight, average health, clean removal of the tumour, a ‘species’ of cancer that has the best response rate there is to radiation therapy, and 8 or 9 times everything will work well and you get the results you were hoping for. Then there’s the 10 or 11th guy in the list; all the same parameters, all the same drugs and treatments, and for reasons you and your $100 million cancer clinic have yet to work out, it all goes to hell, the cancer remains firmly entrenched, and the guy dies.

I don’t know if Jim Wright had one of those days last week or not (I was his first appointment on Monday), but I can imagine that after a man like him, who has invested his life in this work, has a case go sour on him it can feel like all he’s doing is “farting around.” We are all prone to feeling ‘useless’ when we do everything right and it still doesn’t work.

However, focusing on the 10th or 11th guy isn’t going to help any unless you’re a research pathologist. For the rest of us we… I need to focus on the other 8 or 9 guys who make it. It’s like Paul says in Philippians:

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. Philippians 4:8 (ESV)

So we continue on. Supported by Dr. Wright (whom I still have complete confidence in) and his amazing medical staff and volunteers at the Juravinski Centre, and by the many of you who are out there praying for Roberta and I. If you are inclined to do so add Dr. James  Robert Wright and his staff to your prayers; they work hard, care much, and need all the support they can get. Besides, he gave me these lovely lorazepam tables that make sleeping through this a hundred times easier.

I know, but before all you amateur pharmacists (and professionals for that matter – Joan) start emailing me the Wikipedia entries, telling me how highly addictive a drug it is, and regale me with all the side effects associated with benzodiazepines (I can Google it too), I am taking it under my doctor’s care and I’m real good at following instructions. So Chill!

But pondering the doctor’s choice of words aside, I seem to be in good shape; tat is, the treatments seem to be progressing as expected. The sore throat, treated with liquid pain killers, the sleeping aids, the general lack of energy and loss of appetite are all textbook symptoms and appear to be right on schedule. So I am hopeful.

Actually today, I am more concerned for my friend Darby than for me. At 10am today (Wed. Dec. 12) she goes in for a hysterectomy to remove a large fibroid she’s been carrying around for some time now. If you’re praying for me, pray for her too, please!

Till next time … Shalom.

One Down – Thirty-four to Go!

Well, it’s started; the radiation regimen that is.

Today I went down for the first in a series of 35 radiation treatments and, as advertised, it was a very simple and, at this point anyway, painless process.  Well, not entirely painless. The bed they have you lie down on is pretty hard but that’s because a softer surface would allow too much movement and when they are trying to aim a beam of radiation (high energy x-rays I believe) as accurately as possible-movement results in more serious consequences than just a blurry picture.

The drive down was actually rather nice and not just because of the sunny weather.  The Canadian Cancer Society volunteer, Dave (not his real name) is a retired gentleman who has been doing this sort of thing for 8 years. Three times a week (occasionally four if he feels up to it) he drives people with one cancer or another to a variety of medical appointments in Southern Ontario. So far the furthest he has gone is London in one direction and Mississauga in the other.  He refuses to go to Toronto; the traffic there is more than he can handle.  He got started when he mentioned to a friend that he found retirement extremely boring and needed something to do. His friend was already a volunteer and suggested Dave join him.  As I mentioned, that was eight years ago. The friend can no longer drive, but Dave is still going strong.

The depth of Dave’s experience showed best when we hit downtown Hamilton.  Rather than taking the expressway up, for lack of a better term, the back side of the mountain, Dave sped along one back street after another, winding his way through a maze of tree-lined, one way streets miraculously avoiding heavy traffic and arrived at the Juravinski Cancer Centre in a mere 40 minutes.  This was the best time in which I have ever made the trip and it does go to show that if you do something often enough you get very good at it.

At the Centre things went very smoothly.  After a brief wait a charming woman named Kristy led me to a small comfortable room and made sure, first of all, that I was actually Dennis Gray.  When I was there for my orientation they took my picture; she had a copy of it with her and took the time to compare it to me.  Since five days growth of beard hadn’t changed me enough to make me unrecognizable she moved on to the next step.

She  made sure I fully understood what was about to happen, what the side effects of the treatments would be, the recommended ways to deal with them, and what I was going to do with each return trip.  All questions were answered in a pleasant, unhurried manner and repeated in the same manner when needed. It was a very comfortable experience. (See last few Paragraphs of previous post.)

Then after she showed me around a little I changed into a traditional hospital gown (only needed to strip from the waist up which was nice). Then there followed but a brief wait until it was time for me to go in to Machine 10B for my treatment. I had arrived a little early, thanks to Dave so I had time to get in a little reading. Love my Sony eReader.

When the time came Kristy escorted me to Machine 10b and introduced me to the other two treatment technologists. Since I didn’t see much of them (my glasses were off by this point) I can’t seem to remember their names; at least that’s my theory and I’m sticking to it.  But they were all very nice and made me as comfortable as they could on the aforementioned hard bed designed more to keep me immobile than comfortable.  Two quick low-energy x-rays to make sure I was lined up right and then it began.

From the patient’s point of view nothing could be simpler, or more uneventful.  For the next 20 minutes I laid flat on my back, staring straight up at the lights on the ceiling while servo-motors rotated the linear accelerator around me and made slight positional adjustments to the bed I was lying on until I was properly positioned for each of the 9 individual firings. Each firing lasts 20 seconds and is noticeable only by means of a very low volume buzz coming from the direction of the large circular head of the machine.

When the procedure was over (painless this time as I mentioned) I changed back into my shirt and jacket and rejoined Dave in the main lobby. After a quick stop at Tim’s for a double-double we were on our way back to Guelph.

I thanked Dave for his efforts on my behalf when I got home around 5:30, but somehow it hardly seemed adequate. I’ve been thinking about him and his ilk, volunteering the way they do. He picked me up at work, drove me down, waited for me for over an hour, drove me back to the work shop-because in my slight anxiety I forgot my keys, and then drove me home. In all about a three hour slice out of his day.  And this he has done 3 three times a week for the last eight years. They say Guelph is the volunteer capital of Canada. People like Dave are the reason why.  Thanks again Dave.

Speaking of driving; a number of you out there have expressed a willingness, dare I say even a desire, to drive me down for one of my appointments. Well, though it looks like the Cancer Society may have things well in hand, I too would greatly enjoy a chance to spend some time driving with you and getting to know you a little better in the process.  With that end in mind the link below will take you to an online version of my schedule of appointments.

Follow the link and let me know which one (1) appointment for which you positively know you are available to drive me down and drive me home. Keep in mind that each Wednesday they will be giving me an update of my schedule and when they do it’s possible some changes may take place. With new patients coming in all the time occasionally some juggling must take place, so please check back once a week or so.

https://spreadsheets.google.com/ccc?key=0ApI5vq3YTQfNdFgtSVZaZmV3MTZnckoxMC12eVNvdnc&hl=en&authkey=CO73uqYB

Trinty Prayer Shawl

The Prayer Shawl knitted for me by the ladies of Trinity United Church in Guelph

Well, that’s it for this time around. Oh! Except to say thanks once again to my good friend and theatre pal Beth Freeth, her mother, and the folks at Trinity United Church in Guelph, who knitted and prayed over the lovely prayer shawl in the picture at left.  They do this for people who are brought to their attention. They knit the shawls and then pray over them so that the folks who receive them will have a continuing reminder of the warmth of God’s love and the prayers that are going up on their behalf. It’s a marvelous gesture and I will treasure it always.

Gratitude as well to all of you who are praying for me and offering help in other tangible ways. (Great pot roast Margaret!)  I love you all and think of you often.

Till next time.

Shalom.

The Man in the Plastic Mask – Our Story Continues

Well, as I reported last time this was the day we were to spend down in Hamilton getting things ready for my radiation treatments. And for a few moments there, we wondered if we’d even make it.

On Monday Roberta called the Cancer Society to arrange for a volunteer driver to take us down for my three appointments today. The lady at the Society’s office told us that something would be arranged and that the volunteer driver would call my cell phone with the details sometime Wednesday night to make the arrangements for Thursday. Well, by 9 pm last night the driver still hadn’t called and since we were starting to get concerned Roberta started phoning around looking for a ‘plan B’. Unfortunately, she wasn’t too clear on the fact that the first option had appeared to have fallen through, and a lot of folks thought we had simply left asking far too late. Once that little detail was cleared up and folks realized that it was a last minute ‘plan B’ we were looking for, response became more favourable. Sorry Folks!

Anyway, a back-up plan was found; a lawyer friend of ours was willing to let us borrow one of their cars so that Roberta and I could drive down ourselves. Since no actual treatment was going to take place this time (once the treatments start I can’t drive home afterward – must have a driver) driving ourselves was an option.

About 15 minutes after we had gotten off the phone with our friends, the Cancer Society driver finally called. Turns out she had called before (the house number-not my cell phone) but because of confidentiality constraints was unable to leave a message on the machine. Apparently, and this came as a surprise to Roberta and I, a great many cancer patients never tell their families about the disease. They go through weeks and weeks of treatments without ever telling anyone they have cancer; not their co-workers, not their children, not even their spouses. For this reason, the Cancer Society volunteers are not allowed to leave a phone message in case they accidently blow their client’s cover. And since, for some reason, the office had not given the coordinator my cell phone number, we had no idea they had been trying to contact us.

Anyway, we got things sorted out with the volunteer driver and had just finished calling our lawyer friend back to let them know everything was on track when the phone rang again. This time it’s the coordinator of the volunteer drivers for the Cancer Society. While we were on the phone calling our friends (for the second time) he was telling our driver that her schedule for the next day was going to be disrupted because another volunteer was suddenly unavailable. He was calling us because we had happened to mention to the driver that we had a ‘plan B’ in place and he was calling to see if we could still use our back-up plan because he needed our driver to go to Toronto instead of Hamilton.

So, back on the phone to the lawyer-friend and this morning he picked us up at the house; we dropped him off at the office and then Roberta and I were on the road to Hamilton with an extra 20 minutes to spare. God Bless ‘em, I don’t ever want to hear any of you bad-mouthing lawyers again! Lol

The rest of the day was largely uneventful, going pretty much as planned except for one interesting little quirk at the surgeon’s office. We were just checking in with the surgeon’s secretary when he stepped into her office and asked us “Why are you here? I was not expecting to see you until after your radiation treatments were finished.” Turns out the resident at the hospital who told us to make an appointment with the good doctor for two weeks after the surgery was just following standard protocol and Dr. Gupta didn’t actually want to see us at all; he was expecting the Juravinski Centre to handle all the follow-up until after the radiation therapy was complete.

Oh well, no harm done. We did have a nice little chat with him and one of his residents and were happy to have him confirm once again that the 16mm tumour was fully contained in the tonsil and was of the P16 variety of the HP (Human Papillomavirus) type of cancer, a type which responds very well to the radiation treatments and is highly curable. Given the track record of this treatment with this type of cancer no chemo-therapy and no additional surgery should be needed once the radiation regimen is complete. Yay!

The rest of the day went smoothly; nice visit with the rad-techs at the Juravinski as they made the mould by pressing this warm net of plastic over my face (see pic –Sorry, that’s not me, it’s a file pic from web-site. Mine looks just like it though.)

Man in the Plastic mask - not me, file pic from web site

Man in the Plastic mask - not me, file pic from web site

A quick lunch at Tim’s up the street and then back to the clinic for a CT-scan that will be used to help plan my regimen of treatments and be used to aim one of the 11 Varian Linear Accelerators that will be used to administer the radiation treatments.

Well, that’s about it I guess except that I would like to make one observation.

Both Roberta and I have spent a lot of time on the phone and talking to various help care types in both Guelph and Hamilton since this whole thing started almost a year ago, and we have both noticed the same thing. Dealing with the various components of Hamilton Health Sciences has been an amazing experience. The difference between there and here in Guelph is almost like night and day.

Now I want o make it clear that I’m not talking about the people here! I am sure that the people here in Guelph are every bit as dedicated and caring as the folks in Hamilton are; rather I’m talking about the system each are asked to work under. In Guelph we have found it very much a bureaucratic, institutional system. Lots of answering machines, few call backs, overworked staff, and few volunteers resulting in a process that is designed to treat as many people as possible but with comparatively little human interaction.

The Hamilton Health Sciences setup, from our experience anyway, seems to be much better coordinated in a customer-service orientation. We call down there and talk to people within only a few steps through the computer phone system. Everyone we work with seems to be relaxed and un-hurried, their first priority appearing to be making sure we understand everything and we’re still at least marginally within our comfort zone before going on to the next step.

And the volunteers absolutely blew us away. From folks at the information desks guiding you from one part of the hospital maze to another, to the lovely woman going from waiting room to waiting room handing out coffee, tea and cookies (she even got Roberta some hot water she could use to revive her Tim Horton’s green tea), all of them were absolutely amazing. I have never had so relaxing and calming an experience in a hospital or clinic before.

Since we had the same experience at both St. Joseph’s and the Juravinski centre, either they are both reading the same play-book or Hamilton Health Services has set up a wider policy of treating people like people. Whichever it is, from where I was sitting; in the waiting room, in the Mould Room, in the CT scanning room, someone is doing something right in Hamilton.

Like I said, I really don’t believe it’s the people. I think it’s the system they are each asked to work under, one that is institutionally designed to get the job done, and another that seems designed to put patient comfort first. And if, as one friend has suggested, the difference is because both St. Joseph’s and the Juravinski are publically funded, but privately run, then give me the privately run system every time.